Risk Factors for Breast Cancer

Who’s at risk?

Scientists estimate that one in eight women in the United States (about 13.4%) will develop breast cancer in their lifetime. Another way to think of breast cancer risk is that seven of every eight women in America (about 86.6%) will never develop breast cancer.

Women in the United States are diagnosed with breast cancer more than any other type of cancer except for skin cancer. Breast cancer is also the second leading cause of cancer death in women (lung cancer is first). However, breast cancer death rates are decreasing, probably as a result of better and earlier detection and treatment.

The exact causes of breast cancer are unknown. However, the risk of breast cancer increases as a woman gets older. Older women are much more likely to get breast cancer than young women. Nearly eight out of ten breast cancers are found in women over age 50.

What are the risk factors for breast cancer?

Anything that increases your chance of getting a disease is called a risk factor. Below is a list of risk factors that may increase a person’s chance of developing breast cancer. However, these risk factors do not predict who will get breast cancer and who will not. Someone with many of these risk factors may never get breast cancer, while someone with no risk factors could still develop it. There may be other risk factors we do not know about yet. Risk factors for breast cancer include:

• BRCA1 or BRCA2 mutation (See Chapter 4: Genetic Testing and Counseling.)

• Having breast cancer before or having certain types of benign (non-cancer) breast disease
• A mother or sister with breast cancer (especially if they had it prior to age 50)
• Personal history of ovarian cancer Older age (especially after age 50)
• Menstruating (having periods) at an early age (before age 12) or going through menopause at a late age (after age 55)
• Older age at first birth (30+) or never having given birth
• Treatment with radiation therapy to the breast/chest (especially if at a young age)

Additional risk factors may include: breast tissue that is dense on a mammogram*; taking hormones, such as estrogen and progesterone; drinking alcoholic beverages (more than one per day); being Caucasian; and being overweight, especially after menopause (when monthly periods end).

*A breast is said to be dense if it consists mainly of ductal and glandular tissue rather than fatty tissue. A mammogram cannot “see” through the ductal and glandular tissue in dense breasts and is not as effective as a mammogram on a breast with more “see-through” fatty tissue. The only sure way to tell if a breast is mostly fatty or dense is to have a mammogram.

Reducing Your risk

What can reduce the risk of breast cancer?

The following lifestyle changes have been shown to decrease a woman’s chance of developing breast cancer:

• Maintaining a healthy weight, especially after menopause. A healthcare provider can give you guidance on what is a healthy weight for you.
• Reducing alcohol intake. Limit yourself to one drink per day or less.
• Breastfeeding for 12 months or more (combined over all pregnancies).
• Exercising regularly.
• Taking certain medications. For some women at very high risk of breast cancer, tamoxifen or raloxifene may lower their risk of the disease. Researchers are still studying their long-term side effects. Talk to your healthcare provider if you have any questions about these drugs.

Screening

What is screening for breast cancer?

Screening looks for cancer before there are any symptoms. The goal is to find small cancers when they are most treatable before they start to cause symptoms. Mammography does not detect all cancers, but it is the best tool available to detect breast cancer at its earliest stage.

The current screening tests to find breast cancer are not perfect, but they are the best available right now. Most doctors feel that these early detection tests for breast cancer save many thousands of lives every year. Screening will not reduce your risk, but it will help find cancer early, when it is more likely to be treated successfully.

Three tests are commonly used to screen for breast cancer: mammography, clinical breast examinations and breast self examinations.

Mammography

Mammography is currently the standard screening tool used to detect breast cancer and other abnormalities in breast tissue. A mammogram is a safe, low-dose, X-ray picture of the breast. It can often show changes in the breast before you or your doctor can feel them.

Mammography detects 75 to 90 percent of breast cancers. Mammograms are less effective in younger women than in older women because younger women tend to have more dense breast tissue (harder to read on a mammogram).

Mammograms cannot diagnose breast cancer without other follow-up tests. (An abnormal finding requires further testing, such as biopsy, to be able to diagnose whether breast cancer is present.) Also, mammograms have a high “false positive” rate, meaning that they sometimes show something abnormal in the breast when no cancer is present.

For more information about follow-up tests, see Making the Diagnosis section.

Do I need a prescription (order) or physician referral to get a mammogram?

In most cases, yes, you need a referral. It could be from a doctor, physician’s assistant or nurse practitioner. However, some facilities have a list of physicians who will take “self-requesting” women. The woman’s mammography results will be sent to this physician for follow-up and further care, if needed. The reason for this is to make sure women are receiving follow-up care after they get a mammogram. You do not need a referral to go to a public health department and ask for a mammogram.

What is the difference between a screening mammogram and a diagnostic mammogram?

A screening mammogram is performed when the breast is normal (there are no signs or symptoms of anything abnormal) in order to detect the disease early. In the screening mammogram, usually two pictures of each breast are taken. Women should usually begin regular yearly screening mammograms at age 40, or earlier if they are in a very high risk group.

A diagnostic mammogram is performed if you notice changes in your breasts such as a lump, thickening, swelling, pain, nipple discharge (leakage or drainage) or retraction (the nipple or skin being dimpled or pulled in). It may also be performed if something abnormal shows
up on your screening mammogram. The diagnostic mammogram involves extra pictures that are not included in the screening mammogram.

If you notice any lumps or changes in your breasts, it is important to tell your doctor and the mammography provider. They may want to order extra views of your breast and perform a diagnostic rather than a screening mammogram. They may also perform an ultrasound test.

One “normal” mammography report alone does not equal good breast health practice. Regular (yearly) mammograms—not just one—find breast cancer at its earliest, most treatable stage. If your doctors have prior mammogram pictures of your breasts, they will be better able to tell if something in your breast looks abnormal later.

The best way for your doctor or mammography provider to interpret mammography film is by comparing the films with your previous mammogram. If you are going to a new facility, bring your prior films with you if at all possible, or have a copy sent to your new mammographer or doctor.

Are mammograms covered by insurance?

North Carolina law requires health insurance to cover screening mammograms, including one baseline exam for women ages 35-39, a mammogram every other year for women ages 40-49, and an annual mammogram for women age 50 and over. Coverage may include more frequent exams for women at high risk. Medicare now covers mammograms every year.

Are mammograms safe?

Strict guidelines are in place to ensure that mammography equipment is safe and uses the lowest dose of X-ray radiation possible. To put the dose in perspective, the American Cancer Society notes that one mammogram exposes a woman to roughly the same amount of radiation as flying from New York to California on a commercial jet.

During a mammogram, the breast is placed between two plates to flatten the tissue for a few seconds and produce a good, readable picture of the breast. It may be uncomfortable for a few moments, but it does not harm the breast. The thinner the breast can be compressed, the less radiation is required to obtain a good picture.

If you have a lump in your breast, make sure to tell your healthcare provider BEFORE your mammogram.

Are mammograms effective for women of any age?

For the majority of women, mammograms can detect abnormalities in breast tissue. However, for younger women, especially those under age 40, mammograms may not be as effective in detecting breast cancer. This is because younger women tend to have more “dense” breast tissue, and dense breast tissue is harder to read on a mammogram and can hide a breast cancer mass. Mammograms tend to be most effective in women over age 50.

Breast implants can be a problem in obtaining accurate mammogram readings because implants (especially silicone implants) are not transparent on X-rays and can block a clear view of the tissues behind them, especially if the implant has been placed in front of—rather than beneath—the chest muscles.

How do I find a mammography facility in my area?

There are more than 250 North Carolina mammography facilities (including mobile mammography) that are accredited by the American College of Radiology. In North Carolina, to be FDA certified, a facility must first be accredited by the American College of Radiology. To find a certified mammography facility, ask your doctor or see the Resources at the end of this section.

What if I can’t afford a mammogram?

North Carolina has programs in place to help women pay for mammograms. One such program is the North Carolina Breast and Cervical Cancer Control Program (NC BCCCP), available through local health departments. The BCCCP provides free screening for breast or cervical cancer at no cost for women who have limited or no insurance, do not have Medicare or Medicaid, and who meet certain income guidelines. BCCCP does have age limitations, and funding is limited. Most money is allocated to the 50 and above age group.

Clinical Breast Examinations

A clinical breast examination (CBE) is usually performed by your doctor at an annual or biannual visit. CBE may be done during a routine physical exam or together with a mammogram. Your doctor or health professional will carefully examine the breasts and under the arms for lumps or other abnormalities. You should also be given the opportunity to ask questions and express any concerns you may have. Let your doctor know of any changes you may have noticed in your breasts, such as lumps, pain, nipple discharge, changes in shape, differences between breasts, tenderness or skin changes.

Breast Self Examinations

Breast self examination (BSE) consists of looking at and feeling the breasts every month to detect a change in one or both breasts. BSE is recommended a few days after your period ends, when your breasts are least tender and not swollen.

By performing BSE on a regular basis, you will be able to know your breast tissue and recognize changes more quickly. Some women may not perform monthly BSE because they do not know, or have not been taught, how to do it. A healthcare provider can give you guidance about how to do breast self-exam. You can also see the Resources at the end of this section for organizations that have BSE instructions and pictures.

How Often Should You Have Mammograms And Clinical Breast Exams?

The American Cancer Society offers the following screening guidelines:

• Women age 40 or older should have a screening mammogram every year and a clinical breast exam by a health professional every year.
• Women in their 20s and 30s should have a clinical breast exam (CBE) as part of a regular health exam by a health professional, preferably every three years.
• Monthly breast self-exam is an option for women beginning in their 20s. Women should report any breast changes to their healthcare professional right away.

The above recommendations are for women who are at average risk of breast cancer.

Women who are at higher than average risk for breast cancer, such as women with a family history, should talk with their healthcare providers about the benefits and limitations of starting mammography when they are younger, having additional tests (such as breast MRI or possibly ultrasound), or having more frequent exams.

Material in this section was compiled from National Cancer Institute and American Cancer Society educational publications.

Resources

Organizations

American Cancer Society (ACS)

800.ACS.2345 or 866.228.4327 (TTY)
www.cancer.org

Provides information, services and free booklets for all forms of cancer; information on local financial assistance and mammography facilities in your area, diagnosis, treatment, and many other topics, including quality mammography and a breast health card.

American College of Radiology (ACR)

703.648.8900 or 800.227.5463
www.acr.org

Provides information about mammography and other tests used to detect breast cancer.

Breast Cancer Network of Strength

312.986.8338 or 800.221.2141
800.986.9505 (Spanish)
www.networkofstrength.org

Offers breast cancer education and support, and a national 24-hour toll-free breast cancer information hotline.

National Breast Cancer Coalition

202.296.7477 or 800.622.2838

www.stopbreastcancer.org

The nation’s largest breast cancer advocacy group, NBCC publishes fact sheets and position papers on breast cancer issues and an excellent Guide to Quality Breast Cancer Care.

National Cancer Institute’s Cancer information Service

800.4.CANCER (800.422.6237) or 800.332.8615 (TTY)
www.cancer.gov

One of the best resources available for cancer patients, CIS provides the toll-free hotline above in English and Spanish for questions about any type of cancer or to order free booklets. Call to find mammography facilities in your area or to order free booklets about breast cancer, breast changes, and mammograms.

Web Sites

NCcancer.com

www.nccancer.com
Provides information about North Carolina cancer programs as well as information for patients and family on cancer, treatment, resources, caregiver tips, financial assistance, clinical trials and more.

Susan G. Komen for the Cure

800.I’M.AWARE (800.462.9273)
www.komen.org

Foundation for breast cancer research, education, screening and treatment. Call the toll-free helpline above for breast health/cancer questions or to order information about how to do BSE.

U.S. Food and Drug Administration (FDA) Center for Devices and Radiological Health

800.838.7715
www.fda.gov/cdrh/mammography
At the FDA web site, under Consumer Information, there is a list of all mammography facilities certified in the United States (updated monthly). You can locate mammography practices by zip code, state, city and facility name, or call Cancer Information Service at 800.4.CANCER.

Other Diagnostic Tools for Follow-Up

Breast images alone (such as mammograms, ultrasound, MRI) are helpful, but they are often not enough to tell for sure whether a lump is benign or whether it is cancer. Sometimes a doctor might use a thin needle to remove fluid to prove that the lump is a cyst. This is called a cyst aspiration. If a lump does not contain fluid (determined either by an attempt at cyst aspiration or ultrasound), the doctor must remove tissue from the breast to learn whether cancer is present. This is called a biopsy. A diagnosis of breast cancer can only be made after seeing cancer cells in biopsied breast tissue under a microscope.

Doctors can remove tissue from the breast in several different ways:

Fine-needle aspiration. The doctor uses a thin needle to remove cells from the breast lump. Depending on what the sample looks like, it may or may not go to the lab where a pathologist looks at it with a microscope to check for cancer cells.

Core needle biopsy. The doctor uses a thicker needle to remove tiny samples of tissue from the breast lump. The tissue is sent to a lab to check for cancer cells. The doctor will first numb your breast in the area of the lump.

Surgical biopsy. In an incisional biopsy, the surgeon removes a small sample of the lump. In an excisional biopsy, the surgeon removes the entire lump and some surrounding tissue. In either biopsy, the tissue is sent to a lab to check for cancer cells.

Sometimes a lump that is found on a mammogram cannot be felt by you or your doctor. In these cases, the doctor can use different methods to help locate the lump in order to get a sample of the breast tissue. These methods include:

Stereotactic biopsy. The doctor uses a special biopsy needle, directed by a mammogram machine, to take a tissue sample. The area is first numbed well before inserting the biopsy needle. A small cut that does not require stitches is made for this biopsy. Using this method, a generous sample of tissue can be removed without surgery.

Ultrasound-guided biopsy. This is the same type of biopsy as stereotactic biopsy, except that ultrasound is used to guide the biopsy needle instead of a mammogram machine.

Needle-localized biopsy. Guided by a mammogram, ultrasound, or MRI scan (whichever method best finds the abnormality), a radiologist places a very thin wire (about the size of a thick strand of hair) into the lump. A surgeon then uses the wire to guide him or her to the lump during the excisional biopsy.

What is a PET scan?

PET (positron emission tomography) imaging is a diagnostic exam that takes pictures of biological changes in your body. A PET image can help tell your doctor whether a tumor is benign or malignant, and if cancer has spread to other parts of your body. It can also be used to examine the effects of cancer therapy by looking at biochemical changes in the cancer. A radiologist specially trained in PET interprets the results of your scan and provides them to your doctor. PET scans can be more valuable when they are part of a larger diagnostic work-up, such as comparing the PET scan with other diagnostic imaging studies (CT scan or MRI).

On the path to diagnosis, or when having any kind of medical tests, it is highly recommended that you ask questions to help you understand why a test is being done and what it will tell you and your doctor. The more informed you are, the better you will feel about making decisions for treatment, if necessary.

Material in this section was gathered, in part, from National Cancer Institute educational publications (800.4.CANCER or http://www.cancer.org.)

Resources

Organizations

American Cancer Society (ACS)

800.ACS.2345 or 866.228.4327 (TTY)

www.cancer.org

Provides information and services for all forms of cancer, diagnosis, treatment and many other topics. Has free booklets relating to breast cancer, including mammography, biopsies, and talking with your doctor.

American College of Radiology (ACR)

703.648.8900 or 800.227.5463

www.acr.org

Provides information about mammography and other tests used to detect breast cancer.

Breast Cancer Network of Strength

312.986.8338 or 800.221.2141 800.986.9505 (Spanish)

www.networkofstrength.org

Offers breast cancer education, support and a national 24-hour toll-free breast cancer information hotline. Free information includes, “Understanding Your Pathology Report.”

National Cancer Institute’s Cancer Information Service

800.4.CANCER (800.422.6237) or 800.332.8615 (TTY)

www.cancer.gov

This government organization provides the toll-free hotline above in English and Spanish, and booklets to answer questions about any type of cancer, including breast cancer, mammograms, breast changes and more.

Navigate Cancer Foundation

919.267.3657

www.navigatecancerfoundation.org

This foundation provides free and confidential online cancer care navigation services to assist and educate cancer patients from pre-diagnosis to survivorship.

Susan G. Komen for the Cure

800.I’M.AWARE (800.462.9273)

www.komen.org

This foundation for breast cancer research, education, screening and treatment has a toll-free helpline (above) and booklets for callers with breast health/cancer concerns.

Web sites

Biopsy Report: A Patient’s Guide

www.cancerguide.org/pathology.html

Has information on types of biopsies, procedures and a glossary of pathology terms.

BreastCancer.org

www.breastcancer.org

This web site has comprehensive information about prevention, BSE, mammography, diagnostic tests, treatment and many other issues. Information is written by oncology doctors and nurses.

NCcancer.com

www.nccancer.com

Provides information about North Carolina cancer programs as well as information for patients and family on cancer, treatment, resources, caregiver tips, financial assistance, clinical trials and more.

RadiologyInfo

www.radiologyinfo.org

Public information site designed to answer questions related to many radiologic procedures and therapies available. Developed jointly by the American College of Radiology and the Radiological Society of North America.

Getting a Second Opinion

While you may feel uncomfortable or embarrassed to tell your doctor that you would like to get a second opinion regarding your diagnosis and the recommended treatment, your doctor should not be offended or question your right to a second opinion. Many doctors welcome a second opinion.

This generally involves taking your medical records to another doctor who practices in the same field of medicine, who will reevaluate your diagnosis and provide his or her treatment recommendation.

In most situations, you have time to gather all the information you need, including second opinions, in order to be comfortable and confident in the treatment decision you make. In some cases, your insurance provider may require you to obtain a second opinion.

Some tips to consider when you go for your appointment with the second physician

• Call a few days before your appointment to be sure that all your records have arrived (or bring a copy of your records with you to the appointment).
• Be prepared for your visit with a list of questions you would like to ask, and bring along a notebook to write down the answers. You may even want to use a tape recorder and take notes later.
• Try to bring someone else with you to the appointment. You may need the emotional support, and having a second pair of ears will be very helpful in remembering the information you are given. He or she may also ask questions you have not considered.

For more information about second opinions, see the Resources at the end of this section.

The Surgeries

If your doctor recommends that you have breast surgery, your choices may include lumpectomy, partial mastectomy and modified radical mastectomy. Your doctor may recommend a particular surgery for you based, in part, on the size and location of the tumor, the type of cancer and whether or not the malignancy seems to have spread. There are standard protocols for treatment of breast cancer, but your treatment may not be exactly the same as any other woman’s treatment.

Surgeries for breast cancer include:

Lumpectomy involves removal of the lump and a surrounding rim of normal tissue. Some of the underarm (axillary) lymph nodes may be removed to see if the cancer has spread. This is called axillary node dissection. The lump and lymph nodes are examined by a special doctor called a pathologist, who then checks the tissue for the number and kind of cancer cells. The pathologist’s report will help your doctors decide if you need more surgery and will help your healthcare providers determine what other care you may need. Lumpectomy is almost always followed by radiation therapy.

Partial or segmental mastectomy (quadrantectomy) involves removal of up to one fourth or more of the breast, depending on findings. Underarm lymph nodes may also be removed. Radiation therapy is usually given following surgery. More breast tissue is lost in this method than with a lumpectomy.

Simple or total mastectomy involves removal of the entire breast.

Modified radical mastectomy involves removal of the entire breast and some of the underarm lymph nodes.

Sentinel lymph node biopsy is part of some breast cancer surgeries. This procedure identifies the first (sentinel) lymph nodes that receive lymph fluid and cells from a breast tumor. The surgeon then removes these few nodes, and the pathologist checks for cancer cells.

This procedure helps determine if the cancer has spread and if patients can avoid axillary node dissection (removing underarm lymph nodes). In axillary lymph node dissection, many (10-30) lymph nodes are removed, the incision is bigger, recovery time is longer, and there is a greater risk of lymphedema (collection of lymph fluid in arm or hand after lymph nodes have been removed or damaged). For information about lymphedema, see Coping with Post-Treatment Issues.

Prophylactic mastectomy involves removing the breast when there is no cancer present. In some cases, a woman will decide that she wants to have a prophylactic mastectomy of one or both of her breasts. Prophylactic mastectomy is an option for women who have a very strong family history of breast cancer. It is important for a woman to speak with a genetic counselor before making this kind of decision. (For other women, it may be desired in order to “balance” the physical appearance of the breasts, usually followed by reconstruction of both breasts.)

It is important that the woman, her surgeon and her oncologist work together. In some instances, a second opinion may be required in order to be certain that the decision to have prophylactic mastectomy is physically and psychologically sound.

What are common side effects of lumpectomy or partial mastectomy?

Generally, you might anticipate some swelling, tenderness and hardness in the surgical site for some time after the surgery. Pain from the incision wound and discomfort also accompany lumpectomy. While this usually subsides, there can be some persistent twinges of discomfort experienced for months after the initial surgery. Patients also describe pulling or stinging sensations at the incision site as they begin to increase their activity. A ridge of healing, remodeling tissue forms along the incision. This ridge can be felt by you and may remain for many months after surgery.

What are common side effects of mastectomy?

Physically, you might have seroma (accumulation of clear fluid in the wound), hematoma (accumulation of blood in the wound) and wound infection. There will also be a certain degree of pain and limitation in arm and shoulder movement. Your doctor or nurse should provide you with medication for pain relief and instructions on how to do exercises that can help you regain range of motion in your arm and shoulder. You may get numbness or discomfort under your arm. You may need time to adjust to the initial appearance of the incision and the changes that occur as healing and remodeling take place.

What are some side effects of removal of the lymph nodes?

You may experience numbness of the underarm and upper inner arm skin. Another less common, but possible, side effect is lymphedema (swelling of the arm). It is important to know how to prevent or reduce the effects of lymphedema, as it is preventable but not fully curable. (See Coping with Post-Treatment Issues.) If you experience swelling, tightness or pain in your arm, you should tell your doctor or nurse immediately. This can happen immediately after the removal of underarm lymph nodes or years later.

Reconstruction

Reconstruction procedures are designed to restore “normal” appearance after mastectomy. Some women choose to undergo breast reconstruction, and others decide that reconstruction is not for them. It is important to seek early consultation with a plastic surgeon to get information about reconstruction, to determine what options are best for you, and to learn how your choice of reconstruction may affect the overall treatment plan. Some healthcare providers are not aware of the benefits of early consultation, and therefore you may need to ask for a referral.

If your treatment choice includes mastectomy, you may want to find out about your options for breast reconstruction. Some women undergoing lumpectomy are also candidates for reconstructive procedures to restore symmetry. If you know you will definitely have a mastectomy and would want to have reconstruction, it is important that you consult with a plastic surgeon before your mastectomy. In some cases, you can undergo reconstruction at the time of the mastectomy. It is possible for you to have reconstruction years after your surgery. In other situations, this might not be advisable.

If you decide that you would like to have breast reconstruction, you should make sure that you talk with a plastic surgeon who is certified by the American Board of Plastic Surgery and a member of the American Society of Plastic Surgeons. See the Resources at the end of this section.

You may find it helpful to talk with someone who has had the same type of reconstruction you are considering. (See Chapter 10: Women Building Bridges.)

What are my choices for reconstruction?

Implants

One option you may have involves insertion of an implant filled with either silicone gel or saline (saltwater solution). Following mastectomy, your surgeon would insert a tissue expander beneath your skin and chest muscle. Over several weeks or months, the expander is gradually filled with saline in order to stretch the tissue enough to accept an implant beneath the chest muscle. Once the tissue has been expanded enough, you would have another surgery to remove the tissue expander and insert the permanent implant. (Some patients do not require preliminary tissue expansion. In these cases the surgeon would insert the permanent implant.)

If you are considering reconstruction with an implant, you should consult with your surgeon, plastic surgeon and oncologist to be sure that this choice is available to you in your particular situation. Implant reconstruction is nearly impossible following radiation, but is sometimes possible if radiation can be delayed long enough following mastectomy to allow adequate expansion.

Flap Reconstruction

Another common form of reconstruction involves creating a flap of tissue, which may include skin, fatty tissue and muscle taken from other parts of the body, such as the back or abdomen.

In one type of flap surgery, the tissue remains attached to its original site, retaining its blood supply. The flap, consisting of skin, fat and muscle with its blood supply, is tunneled beneath the skin to the chest, creating the breast mound. If tissue from the abdomen is used, this procedure is referred to as a pedicle TRAM flap. If tissue from the back is used, this procedure is referred to as a latissimus dorsi flap. An implant is usually used in addition to a latissimus dorsi flap.

Another flap technique involves using tissue that is surgically removed from the abdomen or buttocks, and then transplanted to the chest by reconnecting the blood vessels to new ones in that region. This procedure, called a “free flap,” requires the skills of a plastic surgeon who is experienced in microvascular surgery. Options include free TRAM flap (using tissue from the abdomen, including muscle), free DIEP flap (using tissues from the abdomen, but no muscle), and free SGAP flap (using tissue from the buttocks).

Because muscle flap reconstruction involves the blood vessels, women who are obese, smoke or have diabetes, vascular or connective tissue diseases may not be good candidates for this type of breast reconstruction.

In either case, flap reconstruction is more complex than tissue expansion, and recovery will take longer than with an implant. Nevertheless, a second surgery is usually not required, and office visits for tissue expansion are not necessary. As with any surgical procedure, you should understand the risks involved, be aware of the pros and cons of each reconstructive surgery option and discuss them fully with your healthcare team before you make your decision.

If you do not feel comfortable with the treatment plan following consultation with one plastic surgeon, then a second opinion should be strongly considered. See Resources at the end of this section for more information about reconstruction.

Nipple Reconstruction

Along with breast reconstruction, you may also have nipple reconstruction. Generally, this is accomplished by using existing skin and fat on the chest wall/breast reconstruction site. The skin is molded to form the shape of a nipple on the breast mound. Areola reconstruction may also be done through the use of a dark pigmented color (matching that of the other areola) tattooed around the nipple or a skin graft from the groin. These procedures are usually performed several months after the initial reconstruction, and are minor outpatient or office-based procedures.

For more detailed information about these procedures, and which procedure may be best for your particular situation, you should see a Board-certified plastic surgeon.

Treatment Therapies

Advances in breast cancer diagnosis and treatment are constantly being made. One interesting new breakthrough is the Oncotype DX™ lab test. It is ordered by doctors for certain women with early stage breast cancer. The test analyzes 21 genes in tumor tissue and is used to predict the risk recurrence score. This risk score is risk of recurrence based on treatment with Tamoxifen alone. This helps doctors tailor treatment to the individual patient.

Radiation Therapy

Radiation therapy uses special X-ray beams to kill local cancer cells that may remain behind where the lump was removed from the breast. It involves daily, brief, painless treatments, usually for six to seven weeks.

Before you receive any treatments, you will go through a dry run called a simulation. You will have to lie still on your back. Small, permanent marks (tattoos) will be placed on your skin. These marks allow the radiation technologists to aim the therapy beam precisely. As you lie with your hand above your head, a specialist will measure your breast to determine the right amount of therapy for you.

Some women find the simulation and radiation therapy process emotionally draining. You might try to prepare for the session by practicing relaxation or spiritual techniques such as prayer. You might bring a music player to the session to listen to music or an audiobook. You may want to check with your doctor or the radiology technologist first to see if these will be allowed.

During the last five days of radiation, some women will have a procedure called a boost. The boost is an extra bit of radiation directly aimed at the original tumor site. During this time, a different kind of radiation machine is used. The area of boost may become a little red, similar to sunburn. If you experience any pain or difficulty during this procedure, let your radiation oncology nurse or doctor know immediately.

If you have side effects, they will most likely be fatigue, skin changes, such as redness, drying or peeling at the radiation site, or a change in the color of your areola, nipple or breast. Your radiation oncology nurse can suggest ways for you to take care of these symptoms. These expected side effects of treatment will gradually disappear over weeks to months after you finish the course of radiation.

Chemotherapy

Chemotherapy for breast cancer is a systemic (whole body) treatment. During chemotherapy one or more anti-cancer drug(s) will be given through a vein or by mouth in pill form. Most women receive chemotherapy for breast cancer as an outpatient in a clinic or hospital. However, there are instances during which you would receive chemotherapy as an inpatient of a hospital.

The goals for chemotherapy are to cure cancer, prevent its spread, decrease the speed at which cancer grows, kill cells that have moved from the original tumor site to other parts of your body, or to relieve some of the symptoms caused by cancer. Ask your doctor or nurse to explain what you can expect from the chemotherapy you receive.

• In a 7-day cycle, you receive the drugs every 7 days for the total number of treatments you are planned to receive.
• In a 14-day cycle, you receive the drug(s) on Day 1, then wait 13 days until the next cycle of chemotherapy. You may need support drugs for nausea or for your bone marrow during this time.
• In a 21-day cycle, you receive the drug(s) on Day 1, then wait 20 days before the next chemotherapy treatment.
• In a 28-day cycle, you usually receive the drug(s) on Day 1 and Day 8, and then get a 20-day break.

This process is repeated for three, six or twelve months, depending on your type of cancer and on the type of chemotherapy your doctor recommends.

Chemotherapy attacks cells, especially those that reproduce rapidly, as cancer cells do. It also affects normal cells that reproduce rapidly, such as cells in the stomach lining or mouth.

Because these drugs act on normal cells, you will probably experience some side effects as these cells are destroyed. The most common side effects are loss of energy (fatigue), hair loss, nausea and vomiting, mouth soreness, or numbness and tingling of hands or feet. Your healthcare team will work with you to minimize any side effects that you have. (See Managing Side Effects of Treatment.)

When you are first diagnosed with breast cancer, and there is no evidence the breast cancer has spread outside the breast and lymph nodes, your doctor may advise receiving adjuvant chemotherapy. This can be thought of as chemotherapy given as an “insurance policy” to help reduce the risk of the breast cancer recurring in other areas in the body such as the liver, lungs, bones or the brain.

For a minority of women, their breast cancer has already spread to other organs, or it recurs. In those cases, the patient is offered chemotherapy with a less definite endpoint to her treatment, which may last until the cancer cells stop responding to a particular chemotherapy drug.

High Dose Chemotherapy with Stem Cell Transplantation

Women with high-risk breast cancer are more likely to have their breast cancer recur than women with a more favorable diagnosis. (High-risk breast cancer is generally defined as having cancer in four or more underarm lymph nodes.) For the past several years, researchers have been trying to find out whether higher doses of chemotherapy drugs can do a better job of preventing or delaying the spread or return of breast cancer in these patients.

However, high-dose chemotherapy damages the bone marrow, which is then no longer able to produce needed blood cells. To combat this, patients receive stem cell transplants to help repair the damage. Stem cells are found in the bloodstream and are collected from the patient before the chemotherapy is given. After the high-dose chemotherapy, the stem cells are “transplanted” back into the patient and are able to become fully mature red blood cells.

To date, there is no convincing scientific evidence that high-dose chemotherapy with stem cell transplant is better than standard therapy for breast cancer. It also costs much more than standard therapy and is more difficult and dangerous for the patient.

Currently, this therapy is offered only as part of a clinical trial. However, high-dose chemotherapy with stem cell transplant may still prove to be a viable option for some patients and continues to be tested in ongoing clinical trials. To learn more about clinical trials, see the Clinical Trials section.

Hormone Therapy

Whether your doctor suggests hormone therapy depends on the results of a hormone-receptor test of your tumor. Hormone-receptor tests determine whether or not your tumor is hormone sensitive (“estrogen-receptor positive”) or not (“estrogen-receptor negative”). In hormone therapy, synthetic hormones or hormonal suppressants are given either alone or with other anticancer drugs to inhibit the growth of breast cancers that are hormone-sensitive. They do this by affecting the amount of estrogen in the body. In a breast cancer that is hormone-sensitive, estrogen can stimulate growth.

The most common hormonal drug used is tamoxifen. Tamoxifen is one of a class of drugs called SERMS (selective estrogen receptor modulators). SERMs chemically resemble estrogen and work by “tricking” cells into accepting them instead of estrogen. Unlike estrogen, they do not stimulate breast cancer cell growth.

Another class of drug used in hormone therapy is the aromatase inhibitor, a drug for post-menopausal women. After menopause, the ovaries no longer produce estrogen. However, estrogen is still created by the conversion of androgen (another naturally-occurring hormone in the body) into estrogen. Aromatase inhibitors keep this conversion from happening. Therefore, there is less estrogen in the bloodstream to reach estrogen receptors in tumor cells and stimulate tumor growth. Aromatase inhibitors include the drugs Arimidex¨, Femara¨ and Aromasin¨.

Another way to control breast cancer tumors hormonally, in pre-menopausal women, is ovarian ablation (stopping the function of the ovaries). Radiation may also be used for this. Pre-menopausal women may receive drugs such as Lupron¨ or Zoladex¨ to chemically suppress ovarian function. Or they may undergo surgery to remove the ovaries and induce menopause. Ovarian ablation reduces the amount of estrogen available to reach estrogen receptors in tumor cells and stimulate tumor growth.

Immunotherapy

Immune therapies include drugs meant to boost the immune system. These are given to allow the chemotherapy treatment to continue in a timely fashion so that it does not have to be delayed by slow recovery of blood counts.

A common group of immunotherapy drugs is the growth factor drug. These include filgrastim (G-CSF) and a similar drug pegfilgrastim, which help treat and prevent infection after chemotherapy by stimulating your bone marrow to make infection-fighting white blood cells.

Another type of growth factor is called Aranesp¨. These drugs prevent and treat anemia (low red blood cells) from chemotherapy.

Targeted Therapy

Herceptin¨ is a currently accepted treatment for advanced cancers that express HER-2/neu. It is usually administered weekly for an entire year. It is currently accepted treatment for early and advanced cancers that express HER-2/neu. In early stage breast cancers it is usually administered weekly or every three weeks

for one year. Herceptin¨ is effective in fighting breast cancers that have too much HER-2 protein. It limits the cancer cell’s ability to continue to grow and divide. This is usually combined with chemotherapy or hormone therapy, but can be used alone or as a maintenance drug.

Ask your doctor if you have questions about any of these therapies.

Breast Prostheses (Breast Forms)

In the event that you do not have breast reconstruction, you may consider using an external breast prosthesis (breast form). This is an artificial breast form that you attach to your body or place in your bra, lingerie or swimwear. There are many companies (locally, regionally and nationally) that either manufacture or carry a variety of breast prostheses.

Most insurance companies allow patients to choose where to purchase a prosthesis. It is helpful for you to see a specially trained fitter who has the skills to help you choose and fit a prosthesis. You should also check with your insurance company about how much it will cover for the prosthesis. Breast forms have a wide range of prices, and some can be very expensive.

When you begin to look for a breast form, you will quickly discover that they come in a variety of shapes (i.e., heart-shaped, asymmetrical, triangular, tear-shaped, oval and round). These variations are designed to accommodate the different needs and shapes of the women who will wear them. Prostheses also come in different weights. A professional fitter will be able to help you choose the correct shape in order to distribute weight evenly against the body for anatomical fit and alignment. The silicone breast forms are available in light, medium and dark skin tones.

If you choose to use a prosthesis, you will find that there are surgical support bras available in attractive, feminine styles to fit most sizes. In addition, bras purchased in department stores may be customized to accommodate your prosthesis, as can other clothing, such as bathing suits and lingerie.

Helpful Hints When Shopping For a Prosthesis

• Make sure your doctor fills out a prescription for your prosthesis (or wig) so that costs may be covered by your insurance. It is a good idea to check with your insurance provider about coverage. Policies vary on what is covered.
• Look for a prosthesis when you have plenty of time to evaluate which breast form suits your needs. Most times it is best for you to make an appointment with a certified fitter so that you can get the personal attention you need to fit your form.
• Bring someone with you who will be supportive and honest about how the breast form looks on you. You may take a T-shirt or light sweater with you to see how the breast form fits under different types of clothing.
• Do not feel that you have to make an instant decision when choosing a breast prosthesis. You will have it for some time, and it is important that you are comfortable with your choice.

See Chapter 12: Suppliers of Breast Cancer Products and Services for stores with certified fitters who can help fit your prosthesis or find or adapt clothing to your particular needs.

Physical Recovery and Rehabilitation

Some women devote so much time, energy and courage to getting through surgery that they neglect their recovery plan. A proper recovery plan requires attention to psychological and physical healing. If you are able to regain control of your physical recovery, it can positively affect the other components in your recovery plan.

Various physical problems may arise after breast cancer surgery. These problems will vary depending upon the woman, the specific type of surgery and the reconstruction efforts. Following surgery, you will likely have some pain or discomfort in the breast area, and possibly numbness or tingling in the arm. You may also have discomfort under your arm where the lymph nodes were removed. This may radiate down the arm, giving you the sensation of “pins and needles” or numbness.

You should not lift anything heavy or begin any exercises until your doctor has given you permission to do so. You will need to exercise the arm on the side of your surgery to restore normal range of motion and to learn how to prevent or treat lymphedema. With the aid of a trained physical therapist, you should be able to recognize and treat these different physical problems.

Studies have shown that women who exercise after surgery tend to have more energy and miss fewer days of work. Exercise may also improve survival. Women diagnosed with breast cancer who exercised by walking at least an hour a week lowered their risk of dying from breast cancer as compared with women who exercised less. Women who walked three to five hours a week lowered their risk even more.

What specific problems would benefit from physical therapy intervention?

Some problems may include, but are not limited to: lymphedema, pain, decreased flexibility and strength of the arm (or other areas), and tightness and rigidity of the scar tissue. (For information about lymphedema, see Coping with Post-Treatment Issues.)

What causes pain, and how can a physical therapist help?

The incision site itself can cause pain. Scar tissue can adhere to nerve cells and cause a variety of sensations, including pain. A physical therapist can address the scar and the tight tissue surrounding the incision through manual techniques that can also be taught to the patient.

Muscle “guarding” and spasm is a normal response to any injury including surgery. This guarding is not only painful but can lead to a particularly debilitating “frozen shoulder.” Specific exercises can help stretch this tissue and prevent further tightening of the affected arm.

Should I wait until all my treatments are completed before seeking physical therapy?

Not necessarily. You should discuss this option with your doctor first, but physical therapy can be beneficial both before and during certain treatments. For example, during radiation therapy, you must lie very still with your arm extended overhead. This position can be very uncomfortable if arm tightness or arm pain persists after breast surgery. Addressing the tightness and pain through specific exercises can make radiation treatments more comfortable for patients.

Some women choose reconstruction with a breast implant. In this case, a tissue expander is placed and is periodically filled with saline to stretch the muscle and skin and make room for the breast implant. In some cases, the pectoralis muscle will respond by involuntary contractions or spasms. These spasms can be controlled through both manual stretching and exercises called isometric contractions.

How do I get referred to physical therapy?

Ask one of your doctors to refer you to physical therapy. It is important for your physical therapist to maintain communication with your physicians during your physical therapy treatments. Also, insurance coverage for physical therapy usually requires a doctor’s referral.

Several hospitals in North Carolina offer rehabilitation programs for breast cancer patients. To find out if your local hospital has a rehabilitation program or offers lymphedema services, ask your doctor or see Chapter 13: North Carolina Hospitals and Cancer Centers.

What should I expect at physical therapy?

At your initial evaluation with the physical therapist, it is important for him or her to know: the type of surgical procedure that was performed (simple mastectomy, modified radical mastectomy, etc.), if any cosmetic procedures were done at the time of surgery (breast reconstruction, implants or expanders), and if you are having any chemotherapy or radiation therapy. The therapist will also assess the range of motion of your arms and neck, strength of your arms and trunk, and evaluate your posture. Soft tissue mobility of your scars and surrounding tissue should also be assessed.

After evaluating your strengths and weaknesses, your therapist will design an individualized treatment plan. The ultimate goal is to become independent of physical therapy with a complete home-exercise program designed to address your specific needs.

What if I can’t afford physical therapy or my insurance doesn’t cover it?

Some organizations and hospitals offer free and low-cost breast rehabilitation programs. For example, the American Cancer Society sponsors “Reach to Recovery,” which provides support and information to women facing breast cancer by trained volunteers who are also breast cancer survivors.

Some YWCAs have a program called ENCOREplus¨ , which is designed especially for emotional and physical support following breast cancer surgery. This program includes gentle exercises performed in warm, shallow water to improve flexibility and strengthen affected muscles, gentle floor exercises and relaxation techniques. Ask your doctor or nurse if these programs are available in your area, or call your local YWCA.

There are other organizations and hospitals in North Carolina that offer rehabilitation programs for lumpectomy and mastectomy patients. To see if your local hospital offers lymphedema services, see Chapter 13: North Carolina Hospitals and Cancer Centers.

Resources

Organizations

American Cancer Society (ACS)

800.ACS.2345 or 866.228.4327 (TTY)
www.cancer.org
Provides information and services for all forms of cancer,diagnosis, treatment and more. Programs include Reach to Recovery (rehabilitation after surgery and support) and Road to Recovery (transportation help). Free booklets about breast cancer surgery, chemotherapy and radiation.

American Society of Plastic Surgeons

800.635.0635
www.plasticsurgery.org
Has information about breast reconstruction and a free referral service to find a plastic surgeon in your area.

Breast Cancer Network of Strength

312.986.8338 or 800.221.2141 800.986.9505 (Spanish)
www.networkofstrength.org
Offers breast cancer education, support and a national 24-hour, toll-free breast cancer information hotline, including confidential question and answer feature and referrals.

Buddy Kemp Caring House (Charlotte, NC)

704.384.5223
www.presbyterian.org/health_services/cancer_center/support_services/buddy_kemp_caring_house
Provides a home-like environment for emotional support away from the hospital setting in Charlotte, NC. All services are free.

CancerCare

800.813.HOPE (4673)
www.cancercare.org
All services free. Provides emotional support,information and practical help. Staffed by trained oncology social workers. Support groups, information, educational programs and referrals for services.

Cancer Services, Inc. (Winston-Salem, NC)

336.760.9983 or 800.228.7421
http://cancerservicesonline.org
A non-profit organization serving Forsyth, Davie, Stokes, and Yadkin counties, offering patient services, support and education. All services are free, including cancer medication fund, wigs (as available), Pink Broomstick rehabilitation after breast surgery, and community education programs.

Cornucopia House Cancer Support Center (Chapel Hill, NC)

919.401.9333
www.cornucopiahouse.org 
Offers education, companionship and support to help people cope with cancer. Services are free and open to people with cancer, their family and friends at any stage of their survivorship.

National Cancer Institute’s Cancer Information Service

800.4.CANCER or 800.332.8615 (TTY)
www.cancer.gov
This government organization provides the toll-free hotline above in English and Spanish for questions about any type of cancer. Offers many free booklets about breast cancer and treatment.

National Comprehensive Cancer Network

215.728.4788 or 888.909.6226
www.nccn.org
NCCN publishes breast cancer treatment guidelines with the American Cancer Society. Call for a copy or see the guidelines on their web site.

Navigate Cancer Foundation

919.267.3657
www.navigatecancerfoundation.org
This foundation provides free and confidential online cancer care navigation services to assist and educate cancer patients from pre-diagnosis to survivorship.

U.S. Food and Drug Administration

Breast Implant Information
888.463.6332
www.fda.gov/cdrh/breastimplants
Published a 2000 Breast Implant Information Package, available on their web site or write to request it. To report a breast implant problem, or to receive an FDA MedWatch Package, call 888.463.6332. Web site also has a list of consumer groups for breast implant problems.

YWCA-ENCOREplus¨ Program

www.ywca.org
ENCOREplus¨ programs provide peer support and exercise for women under treatment or recovering from breast cancer. Call the YWCA in your county to see if it has these programs available.

Web Sites

American Society of Clinical Oncology

www.asco.org
A resource for oncologists as well as patients living with cancer. Sponsors the www.cancer.net web site for patient information.

Association of Cancer Online Resources

www.acor.org
This site offers hundreds of online support groups related to cancer. Click on “Mailing Lists” to find groups focused on such issues as BRCA.

BCMETS.org

www.BCmets.org
An online discussion and support group for women dealing with breast cancer metastasis.

BreastCancer.org

www.breastcancer.org
This site has comprehensive information written by oncology doctors and nurses about many breast cancer issues, including understanding your pathology report and your diagnosis, treatment, and reconstruction.

BreastReconstruction.org

www.breastreconstruction.org
Includes comprehensive information about breast reconstruction, including personal stories and images.

Cosmetic/Reconstructive Breast Surgery

http://imaginis.com/breasthealth/reconstruction.asp
Site has comprehensive information on breast reconstruction, including images.

HER2 Support Group

www.HER2support.org
Offers information and support for women regarding HER2 gene.

Inflammatory Breast Cancer Foundation

www.ibcresearch.org
Targets inflammatory breast cancer and the research to find a cure.

Inflammatory Breast Cancer Help and Support

www.ibcsupport.org
Includes information about inflammatory breast cancer, patient stories, resources and links.

Myself: Together Again (m:ta)

www.myselftogetheragain.org
Designed to be a visual guide for younger women who want to see how their bodies will transform before, during and after mastectomy and reconstructive procedures. For a booklet, contact info@myselftogetheragain.org.

NCcancer.com

www.nccancer.com
Provides information about North Carolina cancer programs as well as information for patients and family on cancer, treatment, resources, caregiver tips, financial assistance, clinical trials and more.

Fatigue

What is fatigue?

Fatigue is a feeling of extreme tiredness, exhaustion or lack of energy. Fatigue can also make you feel worn out, weak, heavy or slow. It is the feeling that you don’t have the energy to do the simple things you usually do each day, like showering, cooking, running errands, taking care of others, working or doing light housework. Fatigue in people with cancer often is not improved by rest or sleep.

Why am I fatigued?

Fatigue is very common in people with cancer. There are a number of possible reasons for your reduced energy and increased fatigue.

Cancer treatments such as chemotherapy, radiation therapy, surgery and certain drugs can contribute to draining your energy. A tumor uses your energy for growth, which reduces the energy available to the rest of your body. Cancer cells destroyed during treatment release chemicals that may increase fatigue. Pain, infection and fever also draw energy from your body.

Side effects of treatment, such as nausea and vomiting, may worsen fatigue because you may not be able to get good nutrition. Radiation may contribute to fatigue because the body uses energy to repair damaged skin tissue. Also, a low red blood cell count (anemia) may result from cancer treatment. Since red blood cells are needed to carry oxygen throughout your body, this reduction in oxygen-carrying cells can contribute to your fatigue.

The extreme stress that people with cancer experience over a long period of time can deplete energy levels. Researchers have found that about 40 to 60 percent of the cases of fatigue among medical patients are not caused by the disease or a physical reason. Normal emotional responses to dealing with cancer, such as sadness, depression, anxiety and fear, can all cause or worsen fatigue. All or any of these can decrease your energy and add to your fatigue.

The healing process also requires energy. This, too, can contribute to fatigue.

What can I do about fatigue?

The good news is that there are a number of things that you can do to help manage your fatigue.

• Plan to balance your activity and rest each day. Inadequate rest can be just as energy depleting as not enough activity. Napping can be helpful, but keep in mind that napping during the day may interfere with your ability to sleep through the night.
• Light to moderate exercise may be helpful. Studies are showing that light exercise
  on a regular basis may help people with cancer have more physical energy, improved appetite, better ability to function, improved outlook and sense of well being, and better ability to meet the challenges of cancer and cancer treatment. Talk about exercise with your health care provider.
• Practice energy conservation. Any changes in daily routine require the body to use more energy. Set priorities for activities in a day, and keep a reasonable schedule. Organize your work area to minimize trips. Avoid unnecessary standing and other energy drains. Take advantage of offers of help. Schedule important daily activities during times of less fatigue, and cancel unimportant activities that cause stress.
• Continue to do activities that you enjoy, if possible, such as walking, gardening, bird watching, crafting or other hobbies.
• Practice healthy eating habits. Good nutrition can provide the fuel you need to promote and maintain energy levels. You may want to avoid fatty foods and large meals, as both can leave you feeling sluggish. Discuss diet and nutrition with your healthcare provider. It may be necessary to use medications to combat mouth sores, nausea and vomiting (possible side effects of chemotherapy) to ensure your ability to eat adequately.
• Let your doctor or nurse know if (or when) you are having difficulty with fatigue or other symptoms that are getting in the way of your usual activities. They are there to help you through the process.

Hair Loss

Will I definitely lose all my hair if I receive chemotherapy?

Understandably, this is a concern of a patient undergoing chemotherapy. Losing your hair is a visual cue to yourself and to others that you are sick. It can affect how you see yourself and how you feel others view you.

Each woman is different in how her body responds to chemotherapy drugs. Some women may lose all their hair very quickly, while for others the process takes longer. Some women will experience only a “thinning out” of their hair and will not lose it all. Your doctor or nurse will be able to give you an idea of the likelihood of hair loss based on your individual treatment program.

How long does it take for the hair to fall out?

Again, each person is different. Depending on your treatment, you might see some hair loss anytime between 10 to 16 days after your first chemotherapy treatment. It may fall out more quickly or it may take a longer period of time.

What can I do about hair loss?

Losing one’s hair can be a stressful experience. We all want to look our best and feel good about our appearance. Losing your hair can affect your level of confidence and self-esteem. However, based on your own comfort level, there are several things you can do to cope with hair loss:

• Cut your hair short (or shorter) before you begin treatment. This is one of the easiest things you can do, especially if your hair is long. A shorter style will make your hair look thicker and fuller. If your hair only thins out, you may not need to do anything else. A shorter hairstyle can also help reduce the anxiety and trauma from having large amounts of hair fall out in a short amount of time.
• If you choose to wear wigs, try to find your wigs before you begin treatment. This will help you to match your current hairstyle and color, if you wish. If you are able, you may want to consider buying more than one wig either the same color and style or two different ones (for variety). Having more than one wig will allow you to have one to wear while the other is being cleaned and restyled. It is best to try on wigs after you have your hair cut short for a more accurate fit.
• Find a hairstylist who is skilled with wigs. This may be your very own hairstylist, which will save you from searching for someone to help you style your wig. If you get your wig through a mail-order catalog, be prepared for the wig to need some shaping, styling and, perhaps, even some cutting to suit your taste. Your doctor or nurse may have names of competent wig stylists or you might try asking someone in a support group who they got to style their wigs. Also, check with your doctor to see if your treatment center offers a “Look Good . . . Feel Better” program, sponsored by the American Cancer Society.
• Wear scarves, hats, turbans or other head coverings, with or without your wigs. Or, you may decide that you don’t want to wear a wig or other head coverings. It all depends on your own comfort level.
• Consider shaving your hair off. When your hair becomes patchy all over your head, sometimes the best thing you can do is get rid of it. Many women report feeling better once they take control and get rid of the hair remnants. If you do this, be sure to exercise great care if you are doing it yourself. An electric razor is probably the best method for shaving your head. Before you do, you may want to consult with your doctor or nurse. It’s possible they, or a friend, may be willing to do it for you.

Where can I find wigs and stylists, hats and other head coverings, and how do I pay for them?

To find a local, mail order, or Internet wig store, wig stylist or stores that have scarves, hats and turbans, see Chapter 12: Suppliers of Breast Cancer Products and Services, or ask your healthcare provider for resources in your community.  Some wig stores or hairstylists offer discounts to cancer patients needing wigs or wig styling. Your local hospital or cancer center or the local American Cancer Society office may have a free wig bank or loan closet, where you can borrow a wig rather than buy one.

Also, some health insurance policies cover the cost of a hairpiece needed because of cancer treatment. It is also a tax-deductible expense. Check your policy, and ask your doctor for a “prescription.”

How long will it take for my hair to grow back?

Generally, your hair will begin to grow back once you have completed treatment. Sometimes it may start growing before you have finished treatment. Sometimes hair may grow back a different color or texture. Since all women are different, there is no way to tell how fast your hair will grow back.

Some tips for taking care of your head and hair during treatment:

• Use a mild shampoo;
• Use a soft hair brush or wide-tooth comb;
• If you use a hair dryer, use low heat;
• Use sunscreen, a hat or scarf to protect your scalp;
• Avoid brush rollers to set your hair; and 
• Avoid dying, perming or relaxing your hair.

Nutrition and Problems with Eating During Treatment (Nausea, Vomiting, Mouth Sores)

You may not (and should not expect to) have these symptoms; however, you should be aware that they are possible. Your doctor or nurse can help you to recognize early signs or symptoms and can give you medications to prevent or relieve them. New drugs have made these side effects far less common; and, when they do occur, they are much less severe. Different drugs work for different people, and you may need more than one drug to get relief. DO NOT GIVE UP. Continue to work with your doctor or nurse to find the drug or drugs that work best for you.

Be sure to tell your healthcare team if you are very nauseated or have vomited for more than a day, or if your vomiting is so bad that you cannot keep liquids down.

Your diet and nutrition are very important during cancer treatment. Here are a few reasons why:

• A healthy diet helps keep up your strength, fights fatigue and promotes rebuilding of the healthy tissue that cancer treatment has destroyed.
• A healthy diet helps maintain your nutrient and energy levels, protecting your natural defenses for fighting infection. You need this now because cancer patients are at higher risk of getting infections due to the effects of cancer treatment.

What can I do if I have nausea and vomiting?

Here are some tips to eating well during your cancer treatment:

• Eat small meals throughout the day rather than two or three regular meals. Your stomach won’t feel as full, and smaller meals are generally better tolerated.
• Eat and drink slowly, and chew your food well for easier digestion.
• Pay attention to your body signals. If one particular food or flavor makes you sick to your stomach, avoid it and eat more of the foods that agree with you.
• If nausea is a problem in the morning, try eating dry foods like cereal, toast or crackers before getting up. (Do not try this if you have mouth or throat sores or if you are troubled by a lack of saliva or dry mouth).
• Try these foods–toast and crackers, yogurt, sherbet, pretzels, angel food cake, oatmeal, chicken (skinned, baked or broiled), soft/bland fruits and vegetables, clear liquids and ice chips. Carbohydrates or bland foods can sometimes help reduce nausea.
• Avoid fatty, greasy or fried foods. Sweets such as candy, cookies, some cakes, spicy or hot or strong-smelling foods can make your stomach more upset.
• Avoid warm, stuffy rooms with strong odors.
• Breathe deeply and slowly when you feel nauseated.
• Drink liquids at least an hour before or after mealtime, instead of with your meals. Drink frequently and drink small amounts. Try cool, clear, unsweetened fruit juices, such as apple or grape juice or light-colored sodas such as ginger ale that have lost their fizz and do not have caffeine.
• Eat foods at room temperature or cooler if hot foods or smells add to your nausea.
• You may want to avoid your favorite foods when you are nauseated, or they may not be your favorite foods for long.
• Rest after meals, but do not lie flat. Sitting for an hour after meals allows your stomach time to empty.
• Wear loose, comfortable clothing. Tight clothing can make you feel more full and restricted.
• Keep track of when your nausea occurs and what causes or aggravates it. Try to make changes in your diet or schedule to allow for this.
• Avoid eating one to two hours before treatment, especially if your nausea occurs during treatment.
• Suck on mints or tart candies. (Do not use tart candies if you have mouth or throat sores.)
• Distract yourself by chatting with friends or family members, listening to music, reading or watching a movie or television show.

Why is my mouth sore, and what can I do about it?

Mouth soreness can result from chemotherapy treatment. Chemotherapy drugs act upon rapidly producing cells in your body. The drugs affect more than just the cancer cells. Your skin, hair, nails, lining of the stomach, mucous membranes (tongue, throat and inside your mouth) are often damaged by chemotherapy drugs. This can cause hair loss (discussed earlier), skin changes, nausea, soreness in your mouth, and other problems.

Mouth soreness should be reported promptly to your healthcare team. There are medications that can help. Good oral care is very important during cancer treatment. Not treating mouth soreness right away can interfere with your ability to eat and can lead to an infection in your mouth. You should not dismiss this as a minor problem if it bothers you at all.

Will the treatments do anything to my teeth?

Some people do have problems with their teeth and gums during and after radiation and chemotherapy. It is a good idea to check with your dentist before starting treatment. He or she might have some suggestions about how to prevent dental problems that may be caused by treatments for cancer. Your dentist also may suggest that you have any teeth cleaning, dental work or cavity-filling done before treatment begins.

Pain (from Cancer or Treatment)

Pain is a personal and individual experience. It is not defined or felt in the same way by any two people. Your previous life experience with pain may influence how you deal with any pain you experience throughout the diagnosis and treatment of your breast cancer.

Should I be experiencing pain from the cancer or treatment?

Not all patients have to deal with pain, but more often than not, it is a problem that many patients do not discuss with their doctors. For this reason, sometimes pain symptoms go untreated. Regardless of the degree of pain you experience, you have the right to be comfortable at all times and to have help to reduce or eliminate your pain.

Your first experience with discomfort may follow your breast biopsy. You may experience pain and discomfort again following surgery. Pain that goes unrelieved can interfere with your activity level and your ability to sleep. It can put you under undue stress, contribute to fatigue, and delay healing. Your doctor or healthcare provider should work with you to obtain an acceptable comfort level.

How can I manage my pain?

First, you should not have to suffer through your pain. Misunderstandings about pain often cause people to not get enough relief from their pain. You can take an active role in managing your pain in a number of ways:

• Tell your doctor or nurse when you have pain. Pain often occurs in cycles. The earlier you report it and seek treatment, the earlier the cycle can be broken.
• Describe your pain in specific terms–such as throbbing, stabbing, aching, burning, cramping, pinching, squeezing, tingling or twitching. This will help your doctor help you get relief from the pain.
• Learn to rate your pain on a scale of 0 to 10, with 0 = no pain and 10 = the worst pain you could imagine. This helps your healthcare provider or caregiver understand your level of pain, to determine what may help achieve relief and to track when relief is achieved and maintained. Keeping a pain diary may also be helpful. This could include when pain occurs, what kind of pain, rating of pain and possible activities or events which may relate to the pain.
• Describe anything that helps relieve your pain. This will provide a better understanding of your pain. In addition to pain medication, individuals have found certain body positions, ice or warm compresses, massage, meditation and acupuncture have helped them achieve pain relief. You might even try some relaxation techniques. Tell your doctor or nurse what works for you.
• Do not hesitate to discuss your past experiences, fears or concerns about pain relief with your doctor or healthcare provider.
• If you are taking pain medications, and you have persistent pain, take your pain medication on a regular schedule. Do not skip doses of your pain medication. If you wait to take pain medication until you feel pain, it is harder to control.
• If you are in pain, and your doctor has no further suggestions, ask to see a pain specialist or have your doctor consult with a pain specialist on your behalf.

Peripheral Neuropathy (Nerve Pain or Weakness)

What is peripheral neuropathy?

Sometimes anti-cancer drugs can cause problems with your body’s nerves. An example of a condition affecting the nervous system is peripheral neuropathy. It is caused by injury to peripheral nerves (those outside of the brain and spinal cord). They are found throughout the body, but peripheral neuropathy is most often limited to peripheral nerves in the fingers, hands, arms, toes, feet and legs.

The symptoms of peripheral neuropathy may include tingling, “pins and needles,” cold, prickling, and burning sensations to numbness and an unpleasant feeling when touching or being touched. Or, it may feel like muscle cramps, heaviness or weakness, and can affect muscle strength and coordination.

What causes peripheral neuropathy?

The most commonly used chemotherapy drugs that cause peripheral neuropathy are Cisplatin, Paclitaxel, Vincristine and Vinblastine. Peripheral neuropathy can be caused by several conditions in addition to chemotherapy. If you have peripheral neuropathy before you start chemotherapy, it may begin sooner or be more severe during chemotherapy.

What can I do if I have peripheral neuropathy?

First, be sure to tell your doctor or nurse if you are having symptoms. They can suggest management strategies and give you advice about the condition. Some other coping strategies include:

• If your fingers are numb, be careful about grasping objects that are sharp, hot, or otherwise dangerous.
• If your sense of balance or muscle strength is affected, avoid falls by moving carefully, using handrails on stairs, and using bath mats in the tub or shower. A cane can also be helpful.
• Wear shoes with rubber or non-skid soles.
• Ask your doctor for pain medication, if necessary.

If you already have symptoms of peripheral neuropathy due to another condition, be sure to tell your doctor or nurse before you start chemotherapy.

Many of the symptoms of nerve effects can be treated. Medications, physical therapy, exercise, massage, and a proper diet all can be helpful. See our Resources at the end of this section for organizations and web sites that have more information and tips about dealing with nerve side effects and peripheral neuropathy.

Is peripheral neuropathy permanent?

The peripheral nervous system can repair itself, particularly if the cause of damage is removed. Recovery may be slow, but after you stop chemotherapy, your condition should get better.

Material for this section was gathered from Chemotherapy and You from the National Cancer Institute (800.4.CANCER or www.cancer.gov) and other publications.

Resources

Organizations

American Cancer Society (ACS)

800.ACS.2345 or 866.228.4327 (TTY)
www.cancer.org
Provides information and services for all forms of cancer,diagnosis, treatment and many other topics. Programs include: Look Good . . . Feel Better (wig and cosmetic help) at local hospitals.

American institute for Cancer Research (AICR)

202.328.7744 or 800.843.8114
www.aicr.org
Provides a wide range of free educational publications about nutrition, including tips about nutrition and cancer and offers many healthy recipes.

American society of Clinical Oncology

703.299.0150
www.asco.org
A resource for oncologists and patients living with cancer. Offers an informational web site for patients at www.cancer.net.

Buddy Kemp Caring House (Charlotte, NC)

704.384.5223
www.presbyterian.org/health_services/cancer_center/support_services/buddy_kemp_caring_house
Provides a home-like environment for emotional support away from the hospital setting. All services are free and available to anyone.

CancerCare

800.813.HOPE (4673)
www.cancercare.org
Provides free emotional support, information and practical help. Staffed by trained oncology social workers. Publishes “A Helping Hand,” a free resource guide for people with cancer. Has much information and advice about coping with cancer and chemotherapy side effects.

Cornucopia House Cancer Support Center (Chapel Hill, NC)

919.401.9333
www.cornucopiahouse.org
Offers education, companionship and support to help people cope with cancer. Services free to people with cancer, family and friends at any stage of their treatment, or survivorship. Often has nutrition and food classes.

Look Good . . . Feel Better

800.395.LOOK (5665)
www.lookgoodfeelbetter.org
A free, national public service program to help female cancer patients with appearance and self-image during cancer treatment. Call American Cancer Society at 800. ACS.2345 to find nearest program in your area, or call the hotline above for information and referrals. Spanish speakers available.

National Cancer Institute’s Cancer Information Service

800.4.CANCER or 800.332.8615 (TTY)
www.cancer.gov
One of the best resources available for cancer patients, this government organization provides the toll-free hotline above in English and Spanish for any questions about any type of cancer. Offers much information and advice about cancer treatments and side effects.

National Comprehensive Cancer Network

215.728.4788 or 888.909.6226
www.nccn.org
Publishes the following breast cancer treatment guidelines with the American Cancer Society: “Cancer Pain,” “Cancer-Related Fatigue,” “Fever and Neutropenia” and “Nausea and Vomiting.”

Navigate Cancer Foundation

919.267.3657
www.navigatecancerfoundation.org
This foundation provides free and confidential online cancer care navigation services to assist and educate cancer patients from pre-diagnosis to survivorship.

The Neuropathy Association

800.247.6968
www.neuropathy.org
A public nonprofit organization established by people with neuropathy, their families and friends to provide support and education. Free registration required on the web site to access information and support resources.

Office of Dietary Supplements at the National Institutes of Health

301.435.2920
http://ods.od.nih.gov
Has the latest scientific information about supplements. Can search the web site for journal articles.

The Wellness Community

202.659.9709 or toll free 888.793.WELL
www.thewellnesscommunity.org
Nonprofit organization provides online support groups and education about cancer. Offers the educational kit, “Frankly Speaking About Cancer Treatment: Take Control of Side Effects with Medicine, Mind and Body.”

Web Sites

American Pain Foundation

www.painfoundation.org
An online resource for people with pain, their families, friends, caregivers and the general public. This site is devoted to patient information and advocacy, and provides many links to additional resources.

Association of Cancer Online Resources

www.acor.org
This site offers hundreds of online support groups related to cancer. Click on “Mailing Lists” to find groups focused on such issues as Cancer Fatigue, Cancer Pain, and Pain-Caregivers.

Cancersymptoms.org

from the Oncology Nursing Society
www.cancersymptoms.org
Devoted to the management of fatigue, eating problems, pain, depression, peripheral neuropathy and other side effects.

Cyberdiet

www.cyberdiet.com
Use the “Fast Food Quest,” to get the nutritional, fat and calorie content of fast food chains.

Oncolink’s Coping with Cancer

www.oncolink.org/coping
This site includes information about nutrition, side effects, sexuality, and other topics relating to cancer.

Hormone Replacement Therapy (HRT)

I have breast cancer and took hormone replacement therapy before I was diagnosed. Should I continue to take it?

Your doctor should advise you about whether to continue this drug at the time you are diagnosed with breast cancer. Generally, hormone replacement therapy (HRT) is not recommended for women who have been diagnosed with breast cancer. Recent studies have found that hormone replacement therapy raises the risk of breast cancer and has other unwanted health effects.

Is hormone replacement therapy similar to the hormone therapy sometimes given to women with breast cancer?

No. Researchers have found a way to use hormones, such as tamoxifen, in therapy against breast cancer. This is different from hormone replacement therapy, which is given to increase levels of hormones (such as estrogen or progesterone) in the body after menopause (when monthly periods end). See Hormone Therapy for a description of hormone therapy for breast cancer.

Lymphedema

What is lymphedema?

Lymphedema is swelling that may occur in your arm, hand, upper trunk or breast after breast cancer surgery. During breast cancer surgery, lymph nodes are usually removed from under the arm. This slows the flow of lymph fluid in the area. The fluid may build up and cause swelling. Removing many lymph nodes and/or having radiation therapy can increase the chances of having this swelling. The problem can happen right after surgery, or months to even years later.

What is lymph fluid?

Lymph fluid is a colorless fluid containing the white blood cells that fight infection and disease. Lymph fluid travels through the lymph system in your body much like blood travels through arteries and veins.

What are lymph nodes?

Lymph nodes are small, pea-sized organs located in the lymph system. Their job is to trap bacteria or cancer cells to keep them from spreading throughout the body. They are clustered in areas throughout your body such as underarms, groin, neck, chest and abdomen. The ones in your chest and underarm are the ones that collect the lymph fluid from your breast. This is why they are often removed and looked at while in surgery.

What are some safety precautions?

You will need to protect the arm and hand on the treated side for the rest of your life. You must take extra caution to protect your hand and arm from injury, cuts, scrapes and insect bites. You may have less protection against infection in that arm. It is important to remind healthcare workers to avoid drawing blood and measuring your blood pressure on that arm. Some people wear a medical alert bracelet with this information on it. Blood pressure can be taken on your leg, if necessary.

It is also recommended that you wear gloves while doing housework, gardening and other activities that may put your arm or hand at risk for injury. Because it is possible for lymphedema to occur years after you have finished your treatment, protecting your arm and hand is key to avoiding this swelling or taking care of it as soon as it happens.

If you are at risk for developing lymphedema, the National Lymphedema Network recommends wearing a compression sleeve during air travel. A change in cabin pressure may bring on the first signs of lymphedema. You can get a compression sleeve from a lymphedema therapist with a doctor’s order. See North Carolina Lymphedema Therapists.

What about using anti-perspirant or deodorant under my arm?

You should not use deodorants or anti-perspirants while you are healing from surgery on the underarm on the side of your surgery. Once you are healed, you may use either anti-perspirants or deodorants. Some doctors will recommend use of deodorants only. You should talk about this with your healthcare team.

What can I do about the swelling? Is it permanent?

You should talk with your doctor about this. Sometimes, elevation of the arm for brief periods throughout the day helps the fluid drain. Other methods to reduce swelling include arm exercises, gentle massage to help the fluid drain, and wearing a compression sleeve. Your doctor should refer you to a therapist who specializes in lymphedema treatment if you have a persistent problem with this. If your doctor does not refer you, ask for a referral, or see North Carolina Lymphedema Therapists. Lymphedema can be a permanent condition. Treatment should begin when you first notice swelling or tightness in the arm, hand, underarm or breast. This is the best way to prevent long-term problems.

What is Complete Decongestive Therapy?

Complete Decongestive Therapy (CDT) consists of manual lymph drainage and compression therapy. Therapists believe that by improving the flow of lymph fluid, and then maintaining improvement with a compression sleeve, lymphedema can be successfully treated. The therapy also includes exercises and skin care that the patient can do at home.

Manual lymph drainage (MLD) is a massage technique using light, rhythmic strokes to improve the flow of lymph fluid.

How do I choose a lymphedema therapist?

Lymphedema therapists have a range of training options. The programs they attend vary in length. When you are choosing a therapist, you might want to consider how much training he or she has. See North Carolina Lymphedema Therapists for more information about training programs.

If you have questions about the trainings, call the National Lymphedema Network at 800.541.3259 or see www.lymphnet.org.

Menopause (Natural and Chemically-Induced)

What is menopause?

Menopause is the time in a woman’s life when monthly menstrual periods end. This can occur naturally with aging or it can occur from damage to the ovaries. Menopause naturally occurs in women beginning in their 40s and 50s (but sometimes as young as the 30s).

Before menopause, your ovaries produce the hormone estrogen. Estrogen is responsible for your monthly menstrual periods. After menopause, your ovaries no longer produce estrogen.

Will chemotherapy cause menopause?

Some chemotherapy drugs can damage the ovaries. If the damaged ovaries stop making hormones, the woman may have symptoms of menopause, such as hot flashes or vaginal dryness. Her monthly periods may not be regular or may stop. After treatment some women resume their menstrual cycle. However, for other women this type of menopause can be permanent and has the same effect on the body as naturally occurring menopause. However, women who have early, chemically-induced menopause sometimes have more severe menopause-related symptoms than women who have natural menopause. Ask your doctor if your chemotherapy drugs could lead to early menopause.

What are some typical symptoms of menopause?

Hot flashes, night sweats, sleep problems, trouble concentrating, vaginal dryness and changes in sexual function are the most common effects of menopause. Women can also feel more depressed, anxious or irritable around this time. Longer term, postmenopausal women have an increased risk of high cholesterol, heart disease and stroke. Also, women often lose bone faster after menopause and may be at risk for osteoporosis.

What can I do about menopause symptoms, such as hot flashes and vaginal dryness?

You should discuss menopause and how it affects you with your doctor or nurse. They may be able to prescribe medications to help with hot flashes or other symptoms. Vaginal dryness can be addressed through the use of lubricants prior to sexual activity. There are many products available without prescription to help with this problem.

Many people are beginning to explore the use of alternative therapies, such as herbs or soy food products, to help hot flashes and other symptoms. Some that have shown promise in helping menopause symptoms include red clover, hops, dong quai, flax seed and soy. Be sure to check with your doctor before trying alternative therapies. You must always be cautious about the possibility of taking something that may interfere with treatment or be unsafe for your health condition.

You should seek advice from your healthcare provider about actions you can take to keep your bones and heart strong, such as exercising, quitting smoking, maintaining a healthy weight, and taking calcium and Vitamin D.

Could chemotherapy cause infertility?

Possibly. Because chemotherapy drugs can damage the ovaries, it can make a woman infertile (unable to become pregnant). For women over the age of 35, infertility may be permanent. However, if a woman remains fertile during chemotherapy, she may be able to become pregnant.

Osteoporosis (Natural and Chemotherapy-Induced)

What is osteoporosis?

Osteoporosis or “porous bones” is a condition of decreased bone mass. It causes bones to weaken. Bone is living tissue that continuously undergoes two processes: the breakdown of old bone and the formation of new bone in its place. When more bone is broken down than is replaced with new tissue, osteoporosis can result. Peak bone mass is usually reached by age 38. Then, bone begins to lose mass as part of the aging process. As bone mass is lost, bones become brittle and more fragile, and more likely to break. Men generally lose 20 to 30 percent of their bone mass over their lifetime, and women generally lose 45 to 50 percent of their bone mass.

Why is this important to me now, and what are the risk factors?

As a person receiving cancer treatment, you may be at increased risk for osteoporosis. Risk factors for osteoporosis include:

• Age—the older you are, the greater your risk
• Gender—women are more likely to have osteoporosis
• Early menopause
• Chronic malnutrition
• Lifestyle—smoking, drinking too much alcohol, not getting enough weight-bearing exercise or calcium
• Family history and personal history of fractures
• Race—more prevalent in White and Asian women
• Long-term use of medication such as aromatase inhibitors, corticosteroids, anti-seizure or thyroid medications, some chemotherapy drugs and others
• Bone structure and body weight—small-boned and thin women (under 127 lbs.) are at greatest risk
• Immobility (not being able to move because of disability or other reason).

Chemotherapy can damage the ovaries and interfere with your body producing hormones such as estrogen. If this happens, especially if you end up in menopause, you are at increased risk for osteoporosis. The chemotherapy drug methotrexate can also cause bone loss. It is important that you discuss prevention and treatment strategies with your doctor or nurse.

Would I know if I had osteoporosis?

Early changes in bone density usually cannot be felt and are painless. Osteoporosis is a “silent” disease, and most people don’t know they have osteoporosis until they break a bone. That is why it is important to know the risk factors and to learn what you can do to prevent bone weakening.

Can I be tested for osteoporosis?

Yes. Testing can be done for osteoporosis. First, you should have a thorough health history and physical exam to determine your risk factors for osteoporosis. Your doctor may recommend that you have a Bone Mineral Density (BMD) test if you are at high risk for osteoporosis. It is a safe, painless and non-invasive test. This establishes your baseline bone density (to compare to future tests) and provides useful information in determining the best course of action for you.

In North Carolina, Bone Mineral Density (BMD) tests are being done in some pharmacies. The cost of measuring the BMD in the heel is generally around $30, and will give you a good idea of how dense your spine bone is. However, this test reveals very little about the hip bones, so you will not get the whole picture. The test will give you some information that you can take to your doctor to see if further testing is needed. The test takes about five minutes or less and is painless. You can have this test done without a referral from your doctor.

Sexuality (Body Image, Relationships and Physical Changes)

Every woman’s body image and sense of sensuality and sexuality is unique. No two people have exactly the same response or feelings when they learn they have breast cancer. If a woman has a mastectomy, it can be overwhelming and emotionally difficult for some women. For others, it is a relief to have the cancer removed.

Breasts are a part of many women’s sexual identity. Breasts are symbolic of nurturing, sustaining new life and intimacy. The loss of a breast can be threatening to your sense of self. It is important for you to be open about your feelings for yourself and your spouse, lover or partner.

When should I think about breast reconstruction?

It is very important that you discuss this fully with your surgeons. You may want to consider options regarding breast reconstruction before the time of your initial surgery. If so, you should be referred to a plastic surgeon for a full discussion of your options. In some situations, reconstructing the breast is not advised at the time of your initial surgery, but can be done at a later date after all of your cancer treatment has been completed. Reconstruction can also be chosen years down the road. Or, you may choose not to reconstruct the breast at all.

What if I choose not to have breast reconstruction?

If you wish, external breast forms (called “prostheses”) are available to help minimize the look or impression of losing a breast. There are many different options available to you. You might want to consider this when deciding about surgery and potential reconstruction options. (For more information, see Reconstruction in After the Diagnosis.) You may decide not to have breast reconstruction or may be comfortable not using a breast form.

Will my spouse or partner feel differently about me after surgery?

It is very important that you talk with your partner. Open, honest communication about your feelings, and theirs, will help your overall sense of well being and the intimacy you have with your partner before and after treatment. Your healthcare team may include a social worker or psychologist who can help you address your feelings and fears regarding sexuality and intimacy. Your own acceptance of your body changes can affect how others react or respond to you.

I’m single and not in a relationship. How and when do I tell someone new in my life about my breast cancer and surgery?

Only you can decide whether you are ready to enter into a new relationship. You are the only person who can know whether you feel comfortable and “safe enough” in a new relationship to share your feelings, your experience and your body. While not a question with any easy answers, there are some things you can consider when you find yourself in a new relationship.

• First, have you come to terms with your body changes and your experience with breast cancer?
• Have you accepted the possible changes to your body that might later become issues in a relationship, such as early menopause and inability to bear children, or the possibility of cancer coming back (recurrence)?
• Are you comfortable enough with yourself and your experience to share it with someone else? Decide whether this new person is one who would be caring and sensitive to your needs. If not, then perhaps either the timing is not right or the person is not the right one for you.

Will my sex life be different after breast cancer?

Possibly. Chemotherapy for breast cancer can sometimes cause a woman to go into early menopause. For some women, this can be a difficult time physically, emotionally and sexually. The symptoms of early menopause are sometimes more severe than those that occur with natural menopause. These symptoms can include hot flashes, vaginal dryness and low sexual desire, as well as depression, anxiety and increased irritability.

What are some solutions to sexual problems I may face?

The good news is that there are products and strategies that can help with these problems.

Hot flashes and night sweats can be treated with specific drugs prescribed by a doctor. Some women have also found soy products or herbs to be helpful (see the Menopause section for more information on handling hot flashes).

Vaginal dryness can be improved with the liberal use of a lubricant available in drugstores. Replens, a vaginal moisturizer, has been shown to be effective. Recent studies have found that Estrace (an estrogen cream used vaginally) helps restore the vaginal tissue. Topical doses of estrogen in mild doses may be effective in relieving vaginal dryness. However, some of the estrogen does get absorbed into the body. Check with your doctor about whether these options are right for you.

Low sexual desire is sometimes treated with hormones called androgens. You can have your hormone levels checked and discuss this option with a doctor. There are other personal ways to increase desire, such as reading erotic literature or watching videos. Almost all women who took pleasure in sex before cancer treatment can do so again, although sometimes it takes relearning and practice.

Healthcare providers can prescribe therapies that address other menopausal issues (depression, anxiety, irritability, increased risk of heart disease and osteoporosis). Several new therapies are now available.

Although your breasts may have played a part in your self esteem or sexual identity prior to surgery, remember that your breasts do not define who you are as a person. You are special no matter what the size or shape of your body, and you deserve to be in an open, honest and loving relationship with someone who cares about you—and accepts you—because of who you are in your heart, mind and soul.

Resources

Organizations

American Cancer Society (ACS)

800.ACS.2345 or 866.228.4327 (TTY)
www.cancer.org
Provides information and services for all forms of cancer;diagnosis, treatment and many other topics. Has free booklets about sexuality and cancer, and lymphedema.

Cancer Care

800.813.HOPE (4673)
www.cancercare.org
All services are free. Provides emotional support,information and practical help. Staffed by trained oncology social workers. Also has “Breast Cancer and Sexuality: Surviving and Thriving.”

The Hormone Foundation

800.HORMONE (800.467.6663)
www.hormone.org
Has resources and publications about menopause,osteoporosis and premature ovarian failure.

Living Beyond Breast Cancer

610.645.4567 or 888.753.LBBC (5222)
www.lbbc.org
Addresses post-treatment needs of women with breast cancer through educational programs, newsletter, helpline for survivors and family members. Toll-free survivor’s helpline above is available.

National Cancer Institute’s Cancer Information Service

800.4.CANCER (800.422.6237) or 800.332.8615 (TTY)
www.cancer.gov
This government organization provides toll-free hotline above in English and Spanish for any questions about any type of cancer. Has free booklets about hormone replacement therapy and sexuality.

National Lymphedema Network, Inc.

510.208.3200 or 800.541.3259
www.lymphnet.org
Education and guidance for lymphedema patients, healthcare workers and the general public. Referrals to treatment centers, therapists and support groups.

National Osteoporosis Foundation (NOF)

202.223.2226
www.nof.org
Offers education, information, support and advocacy. Has an electronic support group, “Linking Up,” which offers peer support for men & women ages 20 to 50.

National Women’s Health Network

202.628.7814
www.womenshealthnetwork.org
A national, non-profit organization focused on women’s health issues. Has information on many topics, including breast cancer, menopause, osteoporosis and more.

National Women’s Health Resource Center

877.986.9472
www.healthywomen.org
Offers comprehensive information on women’s health topics. Has “Take Charge of Your Menopause” kit.

North American Menopause Society

440.442.7550 or 800.774.5342
www.menopause.org
Has information about menopause-related issues, lists of healthcare providers, discussion groups and a reading list. Offers a “Menopause Guidebook.”

Osteoporosis Coalition in North Carolina

Older Adult Health Branch
919.715.0122
Provides information about osteoporosis programs in North Carolina. Offers written information and support groups.

Resolve: National Infertility Association

781.556.7172 (administration) or 888.623.0744 (Helpline)
www.resolve.org
Has information about fertility, how to select an infertility specialist and resources in your area.

Web Sites

Association of Cancer Online Resources

www.acor.org
This web site offers hundreds of online support groups related to cancer. Click on “Mailing Lists” to find groups focused on such issues as Cancer Sexuality and Lymphedema.

Dr. Susan Love Research Foundation

www.dslrf.org
This site has comprehensive information about breast cancer and related issues. Includes information about hormones, menopause and osteoporosis.

Lymphedema People

www.lymphedemapeople.com
Created by lymphedema patients, this site addresses many lymphedema issues.

LympheDivas

www.lymphedivas.com
Resource for medically correct fashion compression apparel for those with lymphedema. Has resources and links for breast cancer and lymphedema.

National Woman’s Health Information Center

www.4women.gov
Provides free, reliable health information for women.Has a new “Menopause and Hormone Therapy” section.Information can be ordered from 800.994.9662.

Oncolink: Coping with Cancer

www.oncolink.org/coping
Includes information on cancer and sexuality.

Power Surge: A warm and caring community for women in menopause

http://power-surge.com
Information and frequently asked questions about menopause, interactive chats, medical consultants,message board, Ask the Experts and more.

Shop Well With You

www.shopwellwithyou.org
A body-image resource for women surviving cancer.

North Carolina Lymphedema Therapists

The following is a list of lymphedema therapists in North Carolina. We do not guarantee that this is a complete list of all lymphedema therapists in North Carolina. Check with your local hospital, cancer center or rehabilitation center for additional therapists.

Lymphedema Training and Certification Programs

LeDuc (6 days of training), Klose-Norton (12 days),Lerner (14 days), Casley-Smith (14 days), American Academy of Lymphatic Studies (ACOLS)(14 days),Foldi (20 days), and Vodder (20 days). Some programs teach Vodder “techniques,” but only therapists who have completed the 20-day program are “Vodder credentialed.”

Recently, the Lymphology Association of North America (LANA) began certifying lymphedema therapists who also passed a comprehensive national exam, have a minimum of 135 hours of training in Complete Decongestive Therapy, and at least one year of work experience. These therapists have “CLT-LANA” after their names.

If you have questions about the trainings, call the National Lymphedema Network at 800.541.3259 or see www.lymphnet.org.

Resources

Organizations

American Cancer Society (ACS)

800.ACS.2345 or 866.228.4327 (TTY)
www.cancer.org

Cancer Trials Help, from the Coalition of National Cancer Cooperative Groups, Inc.

877.520.4457
www.cancertrialshelp.org
Has many resources for patients, including a clinical trials finder called “TrialCheck,” information about clinical trials, a patient toolkit, questions to ask, and a glossary.

National Breast Cancer Coalition Fund

800.622.2838 or 202.296.7477
www.stopbreastcancer.org
NBCCF publishes the excellent Guide to Quality Breast Cancer Care, available www.stopbreastcancer.org/nbccf. The Guide includes helpful information on clinical trials.

National Cancer Institute’s Cancer Information Service

800.4.CANCER (800.422.6237)
www.cancer.gov
This government organization provides toll-free hotline in English and Spanish for any type of cancer. Has an excellent clinical trials section, including how to search for a clinical trial. To access “States That Require Health Plans to Cover Patient Care Costs,” see www. cancer.gov/clinicaltrials/learning/laws-about-clinicaltrial-costs.

Navigate Cancer Foundation

919.267.3657
www.navigatecancerfoundation.org
This foundation provides free, expert, and confidential cancer care navigation services to assist and educate cancer patients from pre-diagnosis to survivorship. Web site provides information and links about clinical trials.

Web Sites

Association of Cancer Online Resources

www.acor.org
This web site offers hundreds of online support groups related to cancer. Click on “Mailing Lists” to find groups focused on such issues as Clinical Trials.

BreastCancerTrials.org

www.breastcancertrials.org
Specifically designed for breast cancer patients, this site offers information about clinical trials and a clinical trials matching service.

Cancer411.org

http://cancer411.org
This non-profit organization’s web site includes a clinical trials finder.

Cancer Research Institute

www.cancerresearch.org
Funds cancer and immunology research, and provides information on clinical trials.

Centerwatch: Clinical Trials Listing Service

www.centerwatch.com
Comprehensive resource on clinical trials. Lists available clinical trials and has an e-mail notification service that can inform you of new clinical trials for your condition.

Clinical Trials, from the National Institutes of Health

www.clinicaltrials.gov
This government site is a registry of federally and privately supported clinical trials conducted in the United States and around the world, and also contains information about understanding clinical trial.

EmergingMed

www.emergingmed.com
Provides a free, confidential, clinical trials matching and referral service for cancer patients Can search by phone at 877.601.8601.

Cancer.net, from the American Society of Clinical Oncology (ASCO)

www.cancer.net
Site offers oncologist-approved information on many types of cancer and treatment, side effects, coping,clinical trials and more.

Recurrence … When Cancer Comes Back

There are times when breast cancer returns (or recurs) after you have completed treatment for your initial diagnosis of breast cancer. A recurrence can happen within a relatively short period of time after treatment or many years later. The diagnosis of a cancer recurrence can sometimes be more difficult to accept and handle than the initial diagnosis.

Although you may experience many, if not all, of the same emotions you had when you were first diagnosed, the intensity of these feelings and fears may be greater. You may be forced to face difficult choices and think about serious consequences based on your diagnosis and the choices you make.

Again, every woman is unique. How you and your family and friends choose to handle the news of a recurrence (and the options available to you) may not be how anyone else handles the news.

Fear of recurrence is common and normal among breast cancer survivors. However, when this fear becomes overwhelming and interferes with your normal daily life, consider talking about your feelings with a counselor or therapist or joining a support group.

What types of recurrences can happen?

There are three types of breast cancer recurrence — local, regional and distant. Recurrences usually develop from cancer cells that were there all along, but grew very slowly. Diagnosis of cancer returning does not necessarily mean that the breast cancer is advanced or metastatic. It may be able to be treated successfully.

A local recurrence happens when the breast cancer tumor cells grow back in the breast. If a lumpectomy was performed, the breast cancer cells may have grown back in the same area. If a mastectomy was performed, this may mean that the cancer cells grew back in cells close to the chest wall, skin or nearby tissue.

A regional recurrence happens when the breast cancer has spread outside the breast and underarm (axillary) lymph nodes.This could include areas such as in the chest (pectoral) muscles, lymph nodes under the breastbone and between the ribs (internal mammary), in the lymph nodes above the collarbone (supraclavicular) or in the lymph nodes surrounding the neck.

A distant recurrence (or metastasis) happens when the breast cancer spreads through the lymph system or bloodstream to other sites in the body—such as in the bone, lungs, liver, brain or other areas. This is the most serious type of recurrence.

Cancer that occurs in a separate part of the same breast that had cancer, or that occurs in the other breast, is usually a new cancer and not a recurrence.

What happens after a recurrence is found?

Once a recurrence is found, your doctor will order some of the same tests that are ordered when a metastasis is suspected. These tests would include bone scan, chest X-ray, CT scan, PET scan or MRI scan. These tests are performed to find out the extent to which your breast cancer has spread.

Treatment options for a recurrence depend on a number of factors, including how you were originally treated for breast cancer, the extent of the spread of the breast cancer—whether it is local, regional or distant—and the pathology of your original tumor, or the recurrence, if a biopsy is performed. If the cancer comes back only in the breast, it often can be completely removed by a mastectomy. Sometimes further treatment is recommended, however.

Generally, treatment could include chemotherapy, radiation, hormonal therapies and additional surgery. Whatever you decide to do with regard to treatment is between you, your family and your doctors. If your breast cancer recurrence is advanced (metastatic), you may want to consider entering a clinical trial for experimental drugs or other methods of treatment.

Remember, advances in treatment are being made every day, and what may not have been available to you at the time of your original diagnosis may be a viable option for treatment now or in the future.

Ways to Cope with Metastatic Breast Cancer or Recurrence

When you are told that you have metastatic breast cancer or that your breast cancer has come back, you may experience many different feelings or emotions. Some of these may include shock, fear, sadness, anger, depression, confusion, frustration, disbelief, disappointment and a sense of losing control over your own life.

You may develop an acute sense of how quickly and drastically life can change. You may have thoughts about facing death, what you will miss in life, and how your family will handle all that is about to happen. All of these feelings and reactions are normal and understandable.

You may feel as though choices have been taken away and that from the time you are diagnosed with a recurrence you are in the hands of the medical community. This is not so. While you need to be attentive to what your doctor says about your particular situation and the medical treatment options that are available, you still have one very real and powerful area of control within your grasp — you get to choose your response to what you are facing.

The following are some ways to regain a sense of control and to cope with a diagnosis of metastatic breast cancer or a recurrence:

• Talk about your thoughts, feelings and emotions to someone with whom you feel comfortable. This can be your partner, a family member, friend, support group, professional counselor or therapist. Letting your feelings out will help those who care about you understand your needs a little better and will help you to understand what you need as well.
• Try to figure out what gives you strength to face the days ahead. Some people find comfort and strength in their spiritual life and find that their faith is strengthened through adversity. For some, prayer or meditation can give them just the boost they need to get through another day.
• Take charge of the aspects of your health that you can control, such as exercising and following a healthy diet.
• Continue to participate in as many of your regular activities as possible, including work, playing sports, doing volunteer work and visiting with friends and family. Many people achieve a sense of peace when they feel they are still able to live their lives as normally as possible, even when they are undergoing treatment. Remember, though, to be wise about how much you do and to conserve your strength for those things you really want to do.
• Take steps to relieve your pain and discomfort. One thing you do not have to tolerate is physical pain. You have a right to the best pain control available. Talk to your doctor or nurse about how to control your pain. Don’t wait until your pain is severe to ask for assistance. You might also consider relaxation techniques, biofeedback, imagery or other complementary therapies to help relieve any pain you are having. (See the Pain section on page 39.)
• Consider joining a support group for women with metastatic breast cancer. Talking with other women in similar situations may help you to realize that you are not alone in your experience and may provide you with a support network that fits your needs. See the Support Groups in North Carolina on page 151 for information about metastatic cancer support groups in your area, or try the online support groups listed in the Resourcesat the end of this section. There are also several helpful online communities of women with metastatic breast cancer and their family members.
• Let others help you. We all want to feel that we can handle everything that comes our way. Asking for help is often very difficult to do. However, letting other people help you also helps them. Often, friends and family feel helpless and lost. When you let them do something for you, it gives them some small comfort that they were able to make your days a little easier. (See also Family, Partner and Caregiver Issues on page 144.)
• Keep the lines of communication open. You need to be honest with yourself and with others about your emotions and your needs. People who care about you want to know what they can do to help you through the difficult times. Let them know when you need company, when you need to be alone, when you need for them to listen to you, or even when you just need a hug.
• Consider keeping a journal about what is happening, how you are feeling and what you want to do about it. Do not feel guilty about anything that you express. Sometimes, when you put your thoughts on paper and look at them later, it helps you to gain insight into what you need to do to manage what is happening to you.

There are many other ways in which people find comfort and strength in their journey of living with breast cancer (whether it is an initial diagnosis, metastatic breast cancer or a recurrence). If you or a loved one are facing the difficult challenge, you will learn what is best for you. There is no right or wrong way to face a breast cancer experience. Do what works for you and your family.

Resources

Organizations

American Cancer Society (ACS)

800.ACS.2345 or 866.228.4327 (TTY)
www.cancer.org
Has information on advanced breast cancer and metastatic cancer.

Breast Cancer Network of Strength

312.986.8338 or 800.221.2141
Spanish Hotline: 800.986.9505
www.networkofstrength.org
Has frequently-asked questions about recurrence, and “I Still Buy Green Bananas: Living with Hope, Living with Breast Cancer” online.

Buddy Kemp Caring House (Charlotte, NC)

704.384.5223
www.presbyterian.org/health_services/cancercenter/ support_services/buddy_kemp_caring_house
Provides a home-like environment for emotional support away from the hospital setting. All services free.

Cornucopia House Cancer Support Center (Chapel Hill, NC)

919.401.9333
www.cornucopiahouse.org
Offers support groups, including Living with Metastatic/Advanced Cancer.

Living Beyond Breast Cancer

610.645.4567 or 888.753.5222(LBBC)
www.lbbc.org
Hosts online message board, “Our Corner: A Forum for Women Living With Metastatic Disease.”

National Cancer Institute’s Cancer Information Service

800.4.CANCER or 800.332.8615 (TTY)

www.cancer.gov
Has free booklets about advanced cancer and recurrence.

Web Sites

AdvancedBC.org

www.AdvancedBC.org
Online resource for people living with metastatic breast cancer. Includes information on treatments, clinical trials, helpful products and published materials on metastatic breast cancer.

Association of Cancer Online Resources

www.acor.org
Offers hundreds of online support groups related to cancer. Click on “Mailing Lists” to find groups focused on such issues as Metastatic Cancer.

BCMETS Discussion List

www.bcmets.org
The largest online support group for people with metastatic breast cancer and their families. Includes searchable archives.

BrainMetsBC.org

www.BrainMetsBC.org
Online resource for people diagnosed with brain or other central nervous system metastases. Includes diagnosis and treatment information, expert interviews, patient experiences and research news.

Breast Cancer Center

www.patientcenters.com/breastcancer
Resource center created especially for those with metastatic breast cancer.

BreastCancer.org

www.breastcancer.org
Site includes information and resources for advanced breast cancer and recurrence. Also has transcript from “Ask the Expert Conference on Metastatic Disease-Treatment and Quality of Life Issues.”

Home Care Guide for Advanced Cancer, from the American College of physicians

http://www.acponline.org/patients_families/end_of_life_issues/cancer/
Information for family, friends and hospice workers caring for persons with advanced cancer at home when quality of life is the primary goal.

Inflammatory Breast Cancer Foundation

www.ibcresearch.org
Specifically targets inflammatory breast cancer and the research data to find a cure.

Inflammatory Breast Cancer Help and Support

www.ibcsupport.org
Includes information about inflammatory breast cancer,patient stories, resources and links.

MAMM: Women, Cancer and Community

www.mamm.com
Has information and articles about metastatic breast cancer.

Metastatic Breast Cancer Network

www.mbcnetwork.org
National independent advocacy group formed to help those living with metastatic breast cancer be their own advocate through providing hope, education and information on treatments and coping with the disease.

Resources

Organizations

Accreditation Commission for Home Care, Inc.

919.872.8609 (Raleigh)
Provides information about accredited home care 
organizations in North Carolina.

American Association of Retired Persons (AARP)

800.424.3410 or 877.434.7598 (TTY)
www.aarp.org

In North Carolina:
919.755.9757 (Raleigh)
www.aarp.org/states/nc
Comprehensive information about caregiving, insurance options, Medicare and other topics. Available in Spanish. Free publications for people over age 50 and their caregivers.

American Cancer Society (ACS)

800.ACS.2345 or 866.228.4327 (TTY)
www.cancer.org
Provides information and services for all forms of cancer.Has a free booklet about home care.

America’s Health Insurance Plans

202.778.3200
www.ahip.org
Select “Consumer Information,” where you can access many consumer guides on health insurance including “A Guide to Long-Term Care Insurance” and “Questions and Answers About Health Insurance.”

Association for Home and Hospice Care of North Carolina

919.848.3450 or 800.999.2357 (in North Carolina)
www.homeandhospicecare.org
Has locations and services of hospices and home care in North Carolina and information about hospice and home care.

Home Care Guide for Advanced Cancer, from the American College of Physicians

www.acponline.org/patients_families/end_of_life_issues/cancer
Information for family, friends and hospice workers caring for persons with advanced cancer at home when quality of life is the primary goal.

Joint Commission on Accreditation of Healthcare Organizations (JCAHO)

630.792.5000
www.jcaho.org
Has information on accredited home care and hospice.

Suggestions for the Person Facing the End of Life

Talk about death and make your wishes known. Rarely, if ever, do we have conversations about how we want to live in the final phase of our lives. It is important to have thoughtful and serious discussions with your loved ones about what you want as the end of life draws near. The time to discuss your views about end-of-life care is before a crisis hits.

Plan ahead. Let your loved ones know what you want while you are able to communicate your preferences for care. Continue to have regular discussions about your views, as they may change over time. Plan ahead by drawing up advance directives (legal papers which allow people to state their decisions about end-of-life care ahead of time).

Advance directives can usually be obtained from your healthcare provider or hospital and from several organizations listed in the Resources. They can be changed at any time, even after they are signed. You don’t need a lawyer to complete an advance directive, but each state has its own laws for creating them. For more information and assistance with advance directives, see the Resourcesat the end of this section. Advance directives include:

• Living Will. A set of written instructions recording a person’s wishes about medical care intended to keep the person alive. It is used if a patient becomes terminally ill, cannot function, or is not able to communicate or make decisions. A living will protects the patient’s rights and removes the burden of making decisions from family, friends and physicians.
• Health Care Proxy. The patient chooses someone who makes medical decisions if the patient is unable to do so. Generally, people assign someone they know well and trust to represent their wishes when they can no longer do so.
• Durable Power of Attorney for Health Care. A legal paper that names a person’s health care proxy. Once written, it should be signed, dated, witnessed, notarized, copied, distributed and put into the patient’s medical record.
• Durable Power of Attorney for Finances. A separate legal paper from the Durable Power of Attorney for Health Care. It appoints someone to manage the patient’s financial affairs if the patient is unable to do so.

Be sure to tell your doctor or your healthcare team about what you want regarding end-of-life care. Your doctor needs to know what is important to you to help in making decisions about your care. Let your doctor know if you have appointed a healthcare proxy and who that person is. It is important to remember that plans aren’t always permanent and that your care can be changed if your wishes or your condition change.

What are some ways that caregivers can provide emotional comfort?

Everyone has different needs, but some emotions are common to many people who are dying, including fear of abandonment and fear of being a burden. There may also be concerns about loss of dignity and loss of control. Some ways caregivers can provide comfort are as follows:

• Give the person company—talk, watch movies, read, or just be with the person.
• Allow the person to express fears and concerns about dying, such as leaving family and friends behind. Be prepared to listen.
• Be willing to reminisce about the person’s life, and look through pictures and scrapbooks together.
• Avoid withholding difficult information. Most patients prefer to be included in discussions about issues that concern them and by law have a right to know about their condition.
• Reassure the patient that you will honor advance directives, such as living wills.
• Ask if there is anything you can do.
• Respect the person’s need for privacy.

Hospice

What is hospice?

Hospice provides compassionate care to people at the end of their lives. Hospice involves healthcare providers and volunteers who provide medical, psychological and spiritual support to terminally ill patients and their loved ones. The focus of hospice is quality of life—peace, comfort, and dignity. A major aim of hospice is to control pain and other symptoms so the patient can remain as alert and comfortable as possible.

Hospice services are available to persons who are no longer being treated for their cancer (other than treatments that help with pain or other symptoms). The typical hospice patient has a life expectancy of six months or less. Hospice programs provide services in various settings: the home, hospice centers, hospitals or skilled nursing facilities. Patients’ families are also an important focus of hospice care, and services are designed to provide them with the help, information and support they need.

Hospice can be an invaluable service to patients at the end of life and their families. Doctors and healthcare providers are usually focused on making patients better. They often are not experts about end of life issues and dying.

People who work in hospice are experts about death and dying and the kinds of issues that a patient and his or her family face. For example, they can provide medications to keep the patient comfortable. They may be the ones to alert the family when the patient is nearing death. Many hospices have grief support groups to help family and friends after the patient’s death.

How do I find hospice care?

Sometimes, a doctor refers a patient to hospice care after treatment for the person’s cancer has ended. Be sure to ask for a referral if the doctor does not do this.

You can also ask the nurse, medical social worker or discharge planner for a referral or to help you find the hospice agencies in your area. Also, see Resources at end of this section.

How do I pay for hospice care?

Medicare, Medicaid and most private health insurance companies cover hospice care for patients who meet the eligibility criteria. There may be co-pays and deductibles that apply. Most hospice services are based upon need rather than the ability to pay. Before services begin, find out what the costs will be and what is or is not covered.

The Medicare Hospice Benefit is designed to meet the needs of those who have a terminal illness, providing them and their loved ones with special support and services not otherwise covered by Medicare. Call 800.633.4227 or see www.medicare.gov for more information about Medicare and hospice.

Parts of this section were adapted from educational publications about end of life care and hospice from the National Cancer Institute, 800.4.CANCER or www.cancer.gov.

Resources

Organizations

Aging With Dignity

888.5.WISHES (888.594.7437)
www.agingwithdignity.org
Advocates for the needs of elders and their caregivers,with emphasis on improving care for those at the end of life. Offers the Five Wishes advance directive (legally valid in North Carolina).

American Cancer Society (ACS)

800.ACS.2345 or 866.228.4327 (TTY)
www.cancer.org
Free educational materials available on hospice.

Association for Home Care and Hospice of North Carolina (Raleigh, NC)

919.848.3450 or 800.999.2357 (in North Carolina)
www.homeandhospicecare.org
Call to get locations and services of hospices and home care in your area of North Carolina. Has educational booklets.

Cancer Care

800.813.HOPE (4673)
www.cancercare.org
Has information about end-of-life issues and hospice.

Caring Connections

877.658.8898
www.caringinfo.org
A program of the National Hospice and Palliative Care Organization (NHPCO) to improve care at end of life. Provides educational resources on hospice care, Advance Directives and more.

Carolinas Center for Hospice and End of Life Care

919.677.4100 or 800.662.8859
www.carolinasendoflifecare.org
Provides information for patients and providers about hospice. Web site has a “hospice locator” to assist in finding a hospice near you.

Hospice Association of America

202.546.4759
www.nahc.org/HAA/home.html
Offers several booklets about hospice that can be ordered for a fee or downloaded free from the web site.

Hospice Education Institute

207.255.8800 or 800.331.1620
www.hospiceworld.org
Provides information and referrals about hospice and palliative care and issues relating to caring for the dying and the bereaved.

Hospice Foundation of America

800.854.3402
www.hospicefoundation.org
Offers books, videos, brochures and a newsletter (Journeys) about hospice, living with grief, and a Guide to Recalling and Telling Your Life Story.

National Cancer Institute’s Cancer Information Service

800.4.CANCER or 800.332.8615 (TTY)
www.cancer.gov
Has several booklets about end of life care, advance directives and hospice.

National Family Caregivers Association

301.942.2302 or 800.896.3650
www.nfcacares.org
Education, support and advocacy for caregivers. Free membership for caregivers includes a newsletter and welcome kit.

National Hospice and Palliative Care Organization

703.837.1500 or 800.658.8898 (Helpline)
www.nhpco.org
Information about hospice, how to select a program, communicating end-of-life wishes, Medicare and finding a hospice program close to you. Staff can answer calls in Spanish and some Spanish-language booklets available.

Web Sites

The Alliance for Care at the End of Life

www.afceol.org
Affiliate organization of the National Hospice and Palliative Care Organization that advocates for public policy changes relating to hospice and end of life issues.

Association of Cancer Online Resources

www.acor.org
This site offers hundreds of online support groups relating to cancer. Click on “Mailing Lists” to find groups focused on such issues as Cancer Hospice and Facing Ahead, facing the death of a loved one.

Compassion in Dying

www.compassionindying.org
National advocacy organization to improve pain and symptom management, and expand end-of-life choices.Has advocacy, legal and support materials.

Dying Well: Defining Wellness Through the End of Life

www.dyingwell.org
The web site of Dr. Ira Byock, author of “Dying Well:Peace and Possibilities at the End of Life.” Resources for people facing life-limiting illness.

Fernside: For Grieving Children

www.fernside.org
Has information on how to help a grieving child following the death of a loved one. Includes a section just for children.

GriefNet

http://griefnet.org
An Internet community of people dealing with grief,death and major loss. Offers 47 e-mail support groups dealing with assorted grief issues.

Growth House, Inc.: Online Community for End of Life Care

www.growthhouse.org
Has end-of-life care resources, information on grief, care for the dying, major illness, hospice and more.

Home Care Guide for Advanced Cancer, from the American College of Physicians

www.acponline.org/patients_families/end_of_life_issues/cancer
Information for family, friends and hospice workers caring for persons with advanced cancer at home when quality of life is the primary goal.

Hospice

www.hospicenet.org
Contains information about many end-of-life issues.Provides information and support for patients, families and caregivers.

Last Acts

www.lastacts.org
A national coalition to improve care and caring at the end of life. Offers a Palliative Care Resource Center, Kit’s Legacy (a personal story about a breast cancer patient) and Last Chapters (personal stories).

Mothers’ Living Stories Project

www.motherslivingstories.org
Connects ill mothers with trained volunteers in a process that is healing to both. Volunteer Listeners guide mothers in reviewing their lives and recording their stories for their children.

On Our Own Terms: Moyers on Dying, from PBS

www.pbs.org/onourownterms
Companion guide to the PBS series on dying and end-of-life care. Has information and resources on end-of-life tools, care, grief and comfort, final days, and therapy and support.

Breast Cancer Support Groups in North Carolina for African American Women

If you know of other African American support groups in North Carolina, or if you are forming one yourself, please let us know at 800.514.4860 or www.bcresourcedirectory.org.

Columbus County

Faith in Action Cancer Support Group

Good News Community Outreach Ministry, Inc.
Hallsboro, NC
Meets 2nd & 4th Thursday at 6:00 pm. Call for location. Counseling available upon request.
Contact: Angie Spaulding, RPN, at 910.645.6222 or Armatha Shular, Executive Director, at 910.646.4898 or 910.770.8218

Durham County

Triangle Area Breast Cancer Support Group

Durham, NC
Call for more information. Also called the Triangle Area African American Support Group. Contact: Pearl Shelby at 919.682.3316 or pearl1949@aol.com

Sisters Network Breast Cancer Support Group

Durham, NC
Meets third Thursday of the month; call for time and location.
Contact: Valarie Worthy 919.419.8284 or sisterstriangle@aol.com

Forsyth County

YWCA Sister Speak!

1201 Glade Street, Winston-Salem, NC 27101
www.ywcaws.org
Call for more information. Local support group for African Americans with breast cancer. Contact: Betty Meadows at 336.722.5138, ext. 232 or bettym@ywcaws.org

Mecklenburg County

Sisters Network of the Piedmont

Buddy Kemp Caring House
242 Colonial Avenue, Charlotte, NC 28207
www.sistersnetworkinc.org
Meets third Thursday of the month at 6:30 p. m. Call to confirm.
Contact: Tracy Cook-Brewton at 704. 865. 2227 or sisnetnc@bellsouth.net

Wake County

Sisters Supporting Sisters

Rex Cancer Center
4420 Lake Boone Trail, Raleigh, NC 27607
Meets first Tuesday of the month at 6:00 p. m. Call for room location.
Contact: Latanja Williams-Avery at 919. 784. 6247

Resources

Organizations

African American Breast Cancer Alliance (AABCA)

612.825.3675
www.geocities.com/aabcainc
Founded by African American women who have had breast cancer. Call to request brochure, “Being There!” about breast health for African American women.

Black Women’s Health Imperative

202.548.4000
www.blackwomenshealth.org
An African American health education, research and advocacy organization that has health information, products and programs for African American women.

Educate Our Women (Raleigh, NC)

919.250.4533
Assists low-income, uninsured African American and Latino women in Wake County with mammograms. Provides education about breast health through Lay Health Advisors. Call for details and eligibility requirements.

Living Beyond Breast Cancer (LBBC)

610.645.4567 or 888.753.LBBC (5222)
www.lbbc.org
Addresses post-treatment needs of women with breast cancer through educational programs, newsletters, and a toll-free survivor’s helpline. Offers the booklet and discussion forum, “Getting Connected: For African Americans Living Beyond Breast Cancer. ”

Save Our sisters (Raleigh, NC)
Rex Cancer Center

919.784.6247
Contact Latanja Williams-Avery, Rex Cancer Outreach Assistant. SOS is a group of specially trained lay health advisors from the community (many are survivors) that provides current breast health information, resources and support. To volunteer, call the number above.

Sisters in Partnership (Cabarrus County)

704.920.1255
This group of African American lay health advisors meets the 3rd Saturday of the month at 9:00 a. m. in the Women’s Center at North East Medical Center to plan events and breast health education and outreach strategies. Contact Betty Braxton at betty.braxton@cabarrushealth.org

Sisters Network, Inc.

713.781.0255 or 866.781.1808
www.sistersnetworkinc.org
A national African American breast cancer survivors organization. Focuses on education, prevention, emotional support and heightened awareness of breast cancer for African Americans.

Three chapters in NC:

Piedmont Chapter (Tracy Cook-Brewton, Gastonia, NC, 704.865.2227 or sisnetnc@bellsouth.net)

Triangle Chapter (Valarie Worthy, Durham, NC 919.490.1571 or sisterstriangle@aol.com)

Southeastern NC Chapter (Irene Stuart, Lumberton, NC 910.738.8648 or sistersnetsenc@aol.com)

Web Sites

Medline Plus: African American Health

www.nlm.nih.gov/medlineplus/africanamericanhealth. html
Covers news, nutrition, screening, research, organizations, statistics and other information specific to African Americans.

Resources for Healthcare Professionals

Educate Our Women (Raleigh, NC)

919.250.4533
Assists low-income, uninsured African American and Latina women in Wake County with mammograms. Also provides education about breast health through lay health advisors. Call for details and eligibility requirements.

Hermanas Unidas el Contra Cancer (Cabarrus County)

704.920.1120 (English and Spanish)
This group of Latina lay health advisors meets at The Hispanic Learning Center to plan events and breast health education and outreach strategies.

Latino Health Information for Health Care Providers

www.hsl.unc.edu/Services/Guides/focusonlatino.cfm
This page from the UNC Health Services Library offers a compendium of resources (cultural awareness, translation assistance, patient education, statistics, etc.) for providers working with Latino clients.

Lincoln Community Health Center (Durham, NC)

919.956.4026
www.lincolnchc.org
Has an outreach program to provide screening and bilingual education to uninsured women in Durham County.

Mammograms for Life! (Nashville, NC)
Nash County Health Department

252.459.9819
Provides mammograms and other diagnostic services such as ultrasound and biopsies to women in need, including Hispanic women.

Medline Plus: Hispanic American Health

www.nlm.nih.gov/medlineplus/hispanicamericanhealth.html
Covers news, nutrition, screening, research, organizations, statistics and other issues relevant to Hispanic Americans.

National Council of Women’s Health

212.746.6967
www.ncwh.org
Publishes “Talking to Latinas About Breast Cancer,” a bilingual guide that describes how community organizations can develop successful breast cancer outreach programs for Latinas.

National Center for Cultural Competence

202.687.5387 or 800.788.2066 (TTY 202.687.5503)
www11.georgetown.edu/research/gucchd/nccc
Click on “Publications” to view and download a multitude of guides and tools to improve cultural and linguistic competence in health services.

Nueva Vida

202.223.9100
www.nueva-vida.org
This organization—a support network to inform, support and empower Latinas affected by cancer—can provide Spanish language resources to anyone in need.

Redes en Accion: The National Hispanic/Latino Cancer Research Network

210.348.0255
www.redesenaccion.org
This National Cancer Institute-funded, nationwide network of organizations was developed to combat cancer among Latinos. Offers a Latino Cancer Experts Directory and a Breast Cancer and Hispanic Telephone Education Workshop.

SAHlSA: Short Assessment of Health Literacy for Spanish Speaking Adults

301.427.1364
www.ahrq.gov/populations/sahlsatool.htm
This test, available on the Agency for Healthcare Research and Quality web site, helps health care providers identify Spanish-speaking patients with low health literacy, alerting providers that alternative communication methods may be needed.

Help for Agencies and Providers Offering Bilingual Services in North Carolina

The Access Project

617.654.9911
www.accessproject.org
Click on “Publications” to find several Language Services guides for advocates and providers to ensure that people with limited English proficiency get language help in medical settings.

The Carolina Association of Translators and Interpreters (CATI)

919.577.0840
www.catiweb.org
Professional association for translators and interpreters in different languages. Publishes a yearly membership directory by language and field of expertise.

Interpreter Training

919.715.0992
Coordinated by the North Carolina Office of Minority Heath and North Carolina Interpreter Task Force. Various interpreter-training programs are provided at various locations and times throughout the state.

The North Carolina Refugee Health Program

919.715.3119
www.ncdhhs.gov/dss/refugee
Provides health departments access to the AT&T language line for services for newly arrived refugees.

Breast Cancer Support Group for Latinas

Fe, Amor y Esperanza

El Pueblo, Inc.
4 North Blount Street, Suite 200, Raleigh, NC 27601
919.835.1525
www.elpueblo.org
A support group in Spanish for Latinas diagnosed with breast cancer. This group meets the second Saturday of every month at El Pueblo, Inc. Provides opportunity for Latina survivors to make friends, receive support, and find out information and resources about breast cancer.

Recursos Para Los Profecionales en el Cuidado de la Salud

Centro nacional para la capacidad cultural
(National Center for Cultural Competence)

888.315.5988
www.nccc.org
Buscar en el internet y descargar una multitud de gu’as para mejorar la cultura linquistica y ser competente en la salud y el Servicio medico.

Eduquemos a nuestras mujeres
(Educate Our Women; Raleigh, NC)

919.250.4533
Asiste a mujeres africanas de ingreso bajo, sin seguro del americano y de Latina en condado de la estela con los mammograms. Tambien proporciona la educaci—n sobre salud del seno a traves de consejeros puestos de la salud. Llamada para los detalles y los requisitos de la elegibilidad.

Hermanas Unidas el Contra cáncer
(condado de Cabarrus)

704.920.1120 (ingles y espanol)
Este grupo de consejeros de la salud de la endecha de Latina resuelve en el centro que aprende hispánico para planear acontecimientos y la educaci—n de salud del seno y para exceder estrategias.

Centro de la salud de la comunidad de lincoln
(Lincoln Community Health Center; Durham, NC)

919. 956. 4026
www.lincolnchc.org
Tiene un programa del exceder para proporcionar la investigaci—n y la educaci—n bilingue a las mujeres sin seguro en el condado de Durham.

Mammograms para la vida!
(Mammograms for Life!, Nashville, NC)

Departamento de la salud del condado de Nash
252. 459. 9819
Proporciona mammograms y otros servicios del diagn—stico tales como ultrasonido y biopsias a las mujeres en necesidad, incluyendo mujeres hispánicas.

Medline más: salud americana hispánica
(Medline Plus: Hispanic American Health)

www.nlm.nih.gov/medlineplus/hispanicamericanhealth.html
Cubre las noticias, nutricion, investigacion, investigacion, organizaciones, estadi’stica y otro publica relevante a los americanos hispánicos.

Consejo nacional de la salud de las mujeres
(National Council of Women’s Health)

212. 746. 6967
www.ncwh.org
Publica “hablar con Latinas sobre cáncer de seno, ” una gu’a bilingue que describa como las organizaciones de la comunidad pueden desarrollar el cáncer de seno acertado exceden los programas para Latinas.

Nueva Vida

202. 223. 9100
www.nueva-vida.org
Esta red de la ayuda de la organizacion-uno para informar, para apoyar y para autorizar a Latinas afectado cerca cáncer-puede proporcionar recursos espanoles de la lengua a cualquier persona en necesidad.

Redes en Acción:
la red nacional el hispanico/del cáncer de Latino
(The National Hispanic/Latino Cancer Network)

210. 348. 0255
www.redesenacción.org
El Instituto Nacional de Cáncer fue fundado para toda la nacion y es una organizada para combatir el cáncer de senos entre la mujeres latinas. Ofrece un directorio de expertos para ayudar a la Mujer Hispana, tambien hay talleres de educacion por telefono.

SAHLSA: Gravamen corto de la instruccion de la salud para los adultos de habla hispana (Short Assessment of Health literacy for Spanish-Speaking Adults)

301. 427. 1364
www.ahrq.gov/populations/sahlsatool.htm
Este exámen esta disponible en la Agencia De Ciudado de Salud (Agency for Healthcare Research and Quality) en la página de internet. Ayuda para los ciudados de la salud a las personas de habla hispana y pacientes con una educación baja en salud. Este programa ayuda a tener una buena comunicaci—n cuando otros metodos son necesarios.

Ayuda Para las Agencias y los Abastecedores que Ofrecen Servicios Bilingües en Carolina del Norte

El proyecto del acceso (The Access Project)

617.654.9911
www.accessproject.org
El proyecto del acceso y el programa nacional de la ley de la salud han desarrollado un kit de la acción de los servicios linguísticos para que los abogados y los abastecedores se aseguren de que la gente con habilidad inglesa limitada consigue ayuda de la lengua en ajustes médicos.

La asociación de Carolina de los traductores y de los intérpretes (The Carolina Association of Translators and Interpreters; CATI)

919.577.0840
www.catiweb.org
Asociación profesional para los traductores y los intérpretes en diversas idiomas. Publica un directorio anual de la calidad de miembro por lengua y el campo de la maestría.

Entrenamiento del intérprete (Interpreter Training)

919.715.0992
Coordinado por la oficina de Carolina del Norte del brezo de la minoría y del destacamento de fuerzas del intérprete de Carolina del Norte. Los varios programas del intérprete-entrenamiento se proporcionan en las varias localizaciones y horas a través del estado.

El programa del norte de la salud del refugiado de Carolina
(The North Carolina Refugee Health Program)

919.715.3119
Proporciona departamentos de la salud tienen acceso a la línea de la lengua de AT&T para los servicios para los refugiados nuevamente llegados.

Grupo de Apoyo para los Enfermos Latinos de Cáncer de Seno

Fe, Amor y Esperanza

El Pueblo, Inc. (Raleigh, NC)
919.835.1525
www.elpueblo.org
Grupo de apoyo en espanñol para mujeres Latinas diagnosticados con cáncer de seno. Este grupo se reune cada segundo sábado de mes en el local de El Pueblo, Inc. Proporciona a la mujer Latina la oportunidad de conocer amistades de mujeres que han sobrevivido el cáncer de seno, recibenapoyo, información y fuentes de recursos sobre el cáncer de seno.

Recursos

Las Organizaciónes y Web Sites

Cáncer del seno Network of Strength
(Breast Cancer Network of Strength)

800. 986. 9505 (Telefono de Asistencia para Latinos)www.networkofstrength.org/espanolInformacion y apoyo 24 horas al dia que viene de sobrevivientes de cáncer del seno.

CancerCare

800. 813. HOPE (4673) (L’nea de Asistencia)
www.cancercare.org/EnEspanol/EnEspanolmain.cfm
Cancer Care tiene trabajadores sociales especializados en oncolog’a varios son bilingues en ingles/espa–ol, quienes pueden hablarle a usted por telefono. Tiene informacion acerca del cáncer y el tratamiento y orientacion financiera está disponible. Todos los servicios son gratuitos.

Careline

800. 662. 7030
Para todas preguntas relacionadas de salud, pregunte por operadora que habla espanol. Llame a CARELINE para que les informen sobre cualquier servicio de salud que usted necesite en su área.

Eduquemos a Nuestras Mujeres (Raleigh, NC )

Wake County, NC
919. 250. 4533 (Ana Hernandez, Cordinadora del programa)
Un programa para mujeres latinas y afro-americanas con 35 anos o más, que no tienen seguro medico. Servicios que proveemos: Mamografia y instruccion en el autoexamen de los senos.

El Programa de Cáncer de Seno y Cervical
(Breast and Cervical Cancer Control Program)

919. 715. 0111 o 800. 4. CANCER
Llame al programa local de cáncer del seno y cervical para saber donde puede hacerse una mamograf’a y una prueba de Pap libre o a un costo bajo. Los requisitos de edad y de ingresos varian.

El Pueblo, Inc. (Raleigh, NC)

919. 835. 1525
www.elpueblo.org
El Pueblo, Inc. es una organizacion de abogacia y politica pœblica en Carolina del Norte que se dedica al fortalecimiento de la comunidad Latina. Tiene programas y informacion para los Hispanos y Latinos.

La Alianza Nacional para La Salud de Hispanos
(The National Alliance for Hispanic Health)

202.387.5000 o 866.783.2645
www.hispanichealth.org
Tiene informacion de salud en espanol y Su Familia: Un Telefono de Ajuda Nacional Para Familias Latinas (866. Su.Familia o 866. 783. 2645)

Susan G. Komen for the Cure

800. 462. 9273 (Linea de Asistencia)
www.komen.org
Tiene mucha informacion sobre del cáncer del seno y muchas publicaciones libres en espanol.

National Cancer Institute’s Cancer Information Service

800.4.CANCER or 800.332.8615 (TTY)

www.cancer.gov/espanol

Muchas publicaciones libres y informacion sobre del cáncer en espanol.

Sociedad Americana del Cáncer (American Cancer Society)

800. ACS. 2345 or 866. 228. 4327 (TTY)
www.cancer.org
Tiene mucha informacion sobre del cáncer y cáncer del seno. Muchas folletas libres sobre del cáncer en espanol. Llame 24 horas al dia.

Resources

Organizations

Native American Cancer Education for Survivors (NACES)

303.838.9359 or 800.537.8295
www.natamcancer.org
This organization is a community-based, Native American nonprofit that has educational materials and resources about breast cancer, breast health and clinical trials in Native Americans.

Native CIRCLE: The American Indian/Alaska Native Cancer Information Resource Center and Learning Exchange

www.nativeamericanprograms.org
A resource center providing cancer-related materials to healthcare professionals and the public. Has free brochures on cancer and breast cancer for Native Americans.

Web Sites

Clinical Trials Education for Native Americans

www.natamcancer.org/page147.html
Site has online lessons about clinical trials for Native Americans.

Medline Plus: Native American Health

www.nlm.nih.gov/medlineplus/nativeamericanhealth.html
Covers news, nutrition, screening, research, organizations, statistics and other issues specific to Native Americans.

Native American Healing, from the American Cancer Society

www.cancer.org
From home page, enter “Native American Healing” in the Search box at upper right and click “Go. ” This complementary/alternative therapy page describes Native American healing and how it can benefit as complementary therapy for cancer.

North Carolina Commission of Indian Affairs

www.doa.state.nc.us/cia
Has links to information and resources for Native Americans in North Carolina. Lists the thirteen recognized tribes and organizations in North Carolina.

Triangle Native American Society

www.tnasweb.org
Includes links to Native American organizations and resources across North Carolina.

Resources

Organizations

Asian & Pacific Islander American Health Forum

415.954.9988
http://www.apiahf.org
Advocates to improve health status of Asian American and Pacific Islander communities. Includes the Asian and Pacific Islander National Cancer Survivors Capacity Building Project, www.apiahf.org/programs/ncsn,  an advocacy/survivors’ group.

National Asian Women’s Health Organization

415.989.9747
www.nawho.org
Advocates for underserved women. Publications on women’s health available.

National Coalition for Cancer Survivorship

301.650.9127 or 877.NCCS.YES (877.622.7937)
www.canceradvocacy.org
Offers the Cancer Survivor’s Toolbox, free audiotapes developed by oncology professionals and cancer survivors, that focuses on six key skills to help survivors, family members and caregivers. Available in Chinese.

Web Sites

Asian and Pacific Islander Cancer listserv

www.apiahf.org/programs/ncsn/getinvolved.htm
API Cancer is an e-mail discussion list for Asian and Pacific Islander cancer survivors, families and friends, healthcare providers, researchers, and others. Shares news about cancer research, events, funding opportunities, general cancer issues, and provides an open forum for members to interact.

Asian Pacific Islanders Women’s Health

www.apanet.org/~fdala/
Has translations in several languages about breast cancer and cervical cancer screening.

Medline Plus: Asian American Health

www.nlm.nih.gov/medlineplus/asianamericanhealth.html
Covers news, nutrition, screening, research, organizations, statistics and other issues specific to Asian Americans.

Resources

Organizations

Hadassah: The Women’s Zionist Organization of America

212.303.8094
www.hadassah.org
This Jewish women’s organization publishes free brochures on genetics and breast cancer risk, especially for women of Ashkenazi Jewish descent.

National Cancer Institute’s Cancer Information Service

800.4.CANCER (800.422.6237)
www.cancer.gov
One of the best resources available for cancer patients, this government organization has free booklets on genetics, breast cancer and Ashkenazi Jewish women.

Sharsheret

866.474.2774
www.sharsheret.org
This organization of cancer survivors links young Jewish women diagnosed with breast cancer with other Jewish breast cancer survivors for peer support and information. Hosts breast cancer seminars; transcripts available for breast cancer, fertility and caring for children.

Web Sites

Chicago Center for Jewish Genetic Disorders

www.jewishgeneticscenter.org
This site offers information about Jewish genetic disorders, including hereditary breast cancer.

Hereditary Breast Cancer in Ashkenazi-Jewish Persons

www.infosci.coh.org/ccgp/cspp/akjinfo.aspx
This fact sheet describes the risk of hereditary breast cancer in Ashkenazi-Jewish women.

Learning About Breast Cancer, from the National Human Genome Research Institute

www.genome.gov/10000507
This fact sheet describes hereditary breast cancer and includes a section for Ashkenazi Jews.

Pregnancy, Breast Cancer and Fertility Issues

During pregnancy and breastfeeding there are many changes to a woman’s breasts, including tenderness, rapid growth and increased levels of hormones responsible for milk production. This can make it more difficult to evaluate a woman’s breast for lumps. If there is a breast abnormality, finding it may be delayed because of the normal changes a woman’s breast undergoes during her pregnancy. Delayed detection may result in diagnosis of breast cancer that is more advanced.

Between the ages of 32 and 38, breast cancer is found most often in women who are pregnant or have just given birth (National Cancer Institute). However, it is important to remember that breast cancer diagnosed during pregnancy is very rare. The National Cancer Institute estimates that it occurs in one out of every 3,000 pregnancies (just .03 percent of pregnancies).

The methods for screening and evaluating breast abnormalities during pregnancy are generally the same as those used for women who are not pregnant. However, certain adjustments are made to protect the fetus from exposure to the small amount of radiation from mammograms. Ultrasound may be used first and followed with a non-surgical biopsy, such as fine-needle aspiration biopsy. (See Making the Diagnosis in Chapter 2: Breast Cancer Risk, Diagnosis and Treatment.)

A diagnosis of breast cancer during pregnancy can be very frightening and stressful. However, women have successfully given birth to healthy babies after treatment for breast cancer during pregnancy. Treatment options for pregnant women depend on the stage of the disease and the age of the fetus. Consult with your doctor to determine what course of treatment is best for you in your specific situation.

For women who have had breast cancer and wonder whether it is safe or advisable for them to become pregnant, this is a decision that should be considered carefully and in consultation with a doctor. Many doctors agree that it is fine for women free of cancer and not undergoing treatment to become pregnant.

So far, studies have shown that carrying a pregnancy after breast cancer does not increase the rate of recurrence even for women with estrogen receptor positive breast cancers. However, some doctors recommend that a woman should wait at least two years after breast cancer treatment before trying to become pregnant, to rule out a recurrence. The decision to have a baby may also be affected by the woman’s age, breast cancer characteristics and treatment.

Some women who have been treated with chemotherapy drugs for breast cancer may not be able to become pregnant or may require assisted reproductive technologies to do so. Cancer survivors who are trying to get pregnant for more than six months may want to see a reproductive endocrinologist. Some chemotherapy drugs can affect the function of the ovaries, causing infertility and early menopause. A reproductive endocrinologist (fertility doctor) can perform a few simple tests to determine your fertility status.

If you are already the mother of young children and have breast cancer, it can be difficult to take care of your children and tell them what you are going through. See Children’s Issues in Chapter 9: Support for Patients, Family and Caregivers for information and resources that can help.

The resources listed at the end of this section may help younger women find answers to complicated questions. We hope they also provide some comfort through learning that there are places to turn and others who have gone through similar experiences and have faced similar issues.

What Can Younger Women Do?

• Some breast cancer organizations suggest becoming familiar with how your breasts look and feel by performing monthly breast self-exam (BSE) starting at age 20. The best time to do BSE is after your monthly period ends, at the same time each month. Ask your doctor about how to do BSE correctly or see the Resources at the end of this section.
• If you notice a lump or any unusual changes in your breasts, see your healthcare provider for a clinical breast exam. Remember, the vast majority of breast lumps are not cancer.
• Clinical breast exams are recommended for all women beginning at the age of 20 and every three years after that (after age 40, have them yearly).
• Mammograms are generally not recommended for women until after age 40.
• If you have a family history of breast cancer or several risk factors (See Who’s at Risk and What Can You Do? in Chapter 2: Breast Cancer Risk, Diagnosis and Treatment), ask your doctor if you need to have mammograms or other screening sooner.
• If you need help paying for mammograms or treatment, see Chapter 7: Financial and Other Assistance.
• If you have been diagnosed with breast cancer, think about seeking treatment from one of the three Comprehensive Cancer Centers in North Carolina or from another large cancer center. (See Chapter 13: North Carolina Hospitals and Cancer Centers.) A larger cancer center will have more experience treating young breast cancer patients.

Portions of the above section were adapted from Facts for Life: Young Women and Breast Cancer, from the Susan G. Komen for the Cure, 800.I’M.AWARE or www.komen.org, and Breast Cancer and Pregnancy from the National Cancer Institute, 800.4.cancer or www.cancer.gov.

Resources

Organizations

American Cancer Society (ACS)

800.ACS.2345 or 866.228.4327 (TTY)
www.cancer.org
Young survivors can learn about each other’s experiences and get support from the Cancer Survivors Network, 877.333.HOPE or online at www.acscsn.org.

Breast Cancer Network of Strength

312.986.8338 or 800.221.2141 (English) 800.986.9505 (Spanish)
www.networkofstrength.org
Offers breast cancer education, support and bilingual hotline, and sponsors a ShareRing Network for young women with breast cancer (call or see website to join).

Fertile Hope

888.994.HOPE
www.fertilehope.org
This nonprofit organization provides reproductive information, support and hope to cancer patients whose medical treatments present the risk of infertility. Also provides financial assistance for fertility preservation.

I’m too Young for This! Cancer Foundation, Inc.

877.735.4673
http://i2y.com
Mid-Atlantic Region & NC Chapter Chair: Carolyn Koncal 919.370.4085 or ckoncal@i2y.com
Provides education, resources, networking, peer support, advocacy and more to empower young adults affected by cancer. NC Chapter sponsors monthly “Stupid Cancer Happy Hour” in the Triangle area.

Living Beyond Breast Cancer (LBBC)

610.645.4567 or 888.753.LBBC (5222)
www.lbbc.org
Hosts Young Survivors Group and programs focused on young women’s needs.

National Cancer Institute’s Cancer Information Service

800.4.CANCER (800.422.6237) or 800.332.8615 (TTY)
www.cancer.gov
Has information on breast cancer and pregnancy.

North American Menopause Society

440.442.7550
www.menopause.org
Offers Early Menopause Guidebook (online for free) that contains extensive information on menopause-related changes, post-menopausal health, menopause treatments and a resource section.

Pregnant with Cancer Network

800.743.4471
www.pregnantwithcancer.org
Offers support and hope to women who are diagnosed with cancer while pregnant. Has a peer support program to connect with a woman who has had cancer while pregnant.

Resolve: National Infertility Association

703.556.7172 or 888.623.0744 (Helpline)
www.resolve.org
Provides support and information about infertility,how to select an infertility specialist and direction to resources in your area.

Sharsheret

866.474.2774 (toll-free)
www.sharsheret.org
Helps young Jewish women living with breast cancer. Links young Jewish breast cancer patients with Jewish breast cancer survivors for peer support and information. Hosts breast cancer seminars and has transcripts on caring for children and fertility issues.

Susan G. Komen for the Cure

972.855.1600 or 800.I’M.AWARE (462.9273)
www.komen.org
Offers the free fact sheet, “Facts for Life: Young Women and Breast Cancer” and instructions on how to perform breast self-exam.

Young Survival Coalition

646.257.3000 or 877.YSC.1011
www.youngsurvival.org
A nonprofit network of breast cancer survivors and supporters dedicated to concerns and issues unique to young women and breast cancer. Offers a peer matching program, bulletin board community, survivor stories, an annual conference, and a information line.

Web Sites

Breastcancer.org

www.breastcancer.org
Includes a “Young Women and Breast Cancer” page.Enter “young” in the Search box.

Motherisk

www.motherisk.org

A research group providing evidence-based information about the safety or risk of drugs,
chemicals and disease during pregnancy and lactation. Includes a section on breast cancer in pregnancy.

Myself: Together Again (M:TA) (Raleigh, NC)

www.myselftogetheragain.org
Offers booklet designed to be a visual guide for younger women who want to see how their bodies will transform before, during and after mastectomy and reconstructive procedures.

Nordie’s at Noon

www.nordiesatnoon.com
Shares the personal stories of four women diagnosed with breast cancer at age 30 or younger. Encourages women to be proactive about their health.

Some Tips for Seeing Healthcare Providers

• Get what you need. At least three days before your appointment, call the provider’s office and request any reasonable accommodations you might need. This may include a sign language interpreter, alternate format of health information, help with undressing, etc. This will help the office staff be prepared.
• Be prepared. Before going to the appointment, be sure you know what health issues you want addressed and why. Make a list of the questions you want answered. Most doctors will want to know the date of your last period and what medications you are taking.
• Speed up the process. For your appointment with a new provider, bring evidence of your health insurance coverage with you. Think about insurance issues like co-payments.
• Be assertive. You have the right to receive services. The medical staff is there to help you. Ask for what you need.
• Ask questions. You have a right to get information from every medical provider in a way that you understand. Ask to get information in your native language. Keep asking questions until you understand.
• Share what you know. You know your own body and disability better than a medical provider. Tell the professionals your opinions and any recent medical history related to your visit. Tell them about your disability when appropriate.
• Be willing to listen. After you request information or services, listen to what the answer is. While listening, decide if your questions have been answered. If not, keep asking.
• Keep records. Keep all the papers concerning your health care together in a file. Keep a diary or log of any recent medical problems, medical visits, and medications.
• Bring a friend. If you feel uncomfortable going to your appointment by yourself, take someone with you. Invite a friend or family member who helps you feel stronger or helps you stay focused.
• Remember your rights. Everybody has the right to good health care. Everybody has the right to be informed about their health, to make choices about what happens to their bodies, and to receive services in a timely manner.

A few organizations have specific information and support for women with disabilities: see the Resources below. Please see other sections of the Resource Directory for information about breast cancer diagnosis, treatment and support.

Portions of this section were adapted from Breast Health Access for Women with Disabilities (BHAWD), 510.204.4866 or 510.204.4574 (TDD), www.bhawd.org; the National Women’s Health Information Center, 800.994.WOMAN or 888.220.5446 (tdd), www.4woman. gov/wwd; and the North Carolina Office on Disability and Health, 919.966.0871 or www.fpg.unc.edu/~ncodh.

Resources

Organizations

Breast Health Access for Women with Disabilities (BHAWD)

510.204.4866 or 510.204.4574 (TDD)
www.bhawd.org
BHAWD is a community partnership that offers information, support, and resources for women with disabilities needing breast care. Offers free brochure,“Breast Self-Examination: A New Approach” (for women with physical or sensory limitations).

Center for Research on Women with Disabilities

713.523.0909 or 800.44.CROWD (800.442.7693)
www.bcm.tmc.edu/crowd
CROWD works to expand the life choices of women with disabilities so they may fully participate in community life. Has information and resources on health, aging, and independent living for women with disabilities.

DBTAC: Southeast ADA Center

404.541.9001 (also TTY) or 800.949.4232 (also TTY)
www.sedbtac.org
Provides information about the Americans with Disabilities Act (ADA) and the rights and abilities of people with disabilities.

Lighthouse International

800.829.0500 or 212.821.9713 (TTY)
www.lighthouse.org
Provides resources, support, and free Braille translation services for people with vision loss and health care providers. Free fact sheets include “Keeping Track of Your Medications.”

National Women’s Health Information Center

800.994.WOMAN (800.994.9662) or 888.220.5446 (TDD)
www.womenshealth.gov
Has specific, detailed health information for women with disabilities. Call the numbers above or see the Women with Disabilities section of the web site at www.womenshealth.gov/wwd

North Carolina Office on Disability and Health (Chapel Hill, NC)

919.966.0871 or 919.843.3811 (TTY)
www.fpg.unc.edu/~ncodh
Provides information, resources, free materials on disability and health for people with disabilities and healthcare providers. Has information on working with healthcare providers, a provider’s guide on caring for women with physical disabilities and removing barriers to healthcare. Also has an initiative to improve access to breast care for women with disabilities.

Web Sites

The Adaptive Mammacare¨ Personal Learning System

www.mammacare.com
Designed for use by women who are blind or visually impaired and/or deaf or hard of hearing. Uses a special life-like breast model with videotape instruction or open caption tape for women to learn how to do breast self-examination at home.

Breast Self-Examination: A Handbook for Women With Disabilities

http://dawn.thot.net/BSE_Handbook.html
From the Disabled Women’s Network Ontario, this online handbook describes breast health issues such as breast self-exam and mammography. Has information on alternative services for women with disabilities.

Women First: Breast Health for Women with disabilities, from Wyoming Institute for Disabilities

www.uwyo.edu/wind/breasthealth/handbook.htm
Handbook developed to help women with developmental disabilities learn basic breast health information. Written in easy-to-read format, explains self care, breast health, self-exams, and medical visits.

Resources

Organizations

American Cancer Society (ACS)

800.ACS.2345 or 866.228.4327 (TTY)
www.cancer.org
ACS Cancer Survivor’s Network offers recorded discussions and interviews with lesbian survivors and their partners as well as a discussion board (call 877.333.HOPE or see www.acscsn.org.

Gay and Lesbian Medical Association

415.255.4547
www.glma.org
This organization can recommend gay and lesbian-friendly health care providers in your area through an online health care referrals service.

The Lesbian Community Cancer Project

773.561.4662
www.lccp.org
This agency provides support, information, education, advocacy and direct services to lesbian and non-lesbian women and their families.

Mautner Project: The National Lesbian Health Organization

202.332.5536
www.mautnerproject.org
Education, information, support and advocacy for lesbians with cancer and their families and caregivers helps patients identify support groups and lesbian-sensitive health care professionals. Also offers a national Peer Support Network.

Susan G. Komen for the Cure

972.855.1600 or 800.I’M.AWARE (800.462.9273)
www.komen.org
Has free instructions on how to perform breast self-exam. Offers the free fact sheet, “Facts for Life: Women Who Partner with Women & Lesbians”  and “What’s Happening to the Woman I Love? Couples Coping with Breast Cancer” booklet.

Web Sites

Gay and Lesbian Helpline

www.tcworks.org/helpline.htm
Serves the lesbian, gay, bisexual and transgender communities of the N.C. Triangle area through peer counseling services, education, information, resource referrals and more. (Helpline - 919.821.0055 - staffed Sunday - Thursday, 6:30 - 9:30 pm)

Gender.org

www.gender.org
A gender education and advocacy organization; helps with the needs, issues and concern of gender-variant people.

Lesbian Health and Research Center

www.lesbianhealthinfo.org
Click on “Your Health” to see information about breast care, communicating with healthcare providers, access to care, and other health-related topics.

Lesbian Information Network Coalition (LINC)

www.lincoffayetteville.org
A lesbian community network based in Fayetteville, NC, that builds varied social, educational and recreational support networks.

Resources

Organizations

American Cancer Society (ACS)

800.ACS.2345 or 866.228.4327 (TTY)
www.cancer.org
Free fact sheets, support and resources about male breast cancer. Enter “male breast cancer” in the Search box.

Breast Cancer Network of Strength

800.221.2141 or 800.986.9505 (Spanish)
www.networkofstrength.org
Provides breast cancer education and support. Call the 24-hour, toll-free breast cancer information hotline above to be matched with a male breast cancer survivor for information and support.

John W. Nick Foundation

772.589.1440 or 866.222.4441
www.johnwnickfoundation.org
This nonprofit organization focuses on increasing awareness of male breast cancer, includes personal stories of male breast cancer survivors, and has an information booklet.

Susan G. Komen for the Cure

972.855.1600 or 800.I’M.AWARE (800.462.9273)
www.komen.org
Offers the free fact sheet, “Facts for Life: Breast Cancer in Men.”

National Cancer Institute’s Cancer Information Service

800.4.CANCER (800.422.6237) or 800.332.8615 (TTY)

www.cancer.gov

Has information about male breast cancer and treatment.

Web Sites

Imaginis

www.imaginis.com/breasthealth/bcmen.asp
Has information on symptoms and types of male breast abnormalities, risk factors, diagnosis, treatment and survival rates for male breast cancer, and resources.

Male Breast Cancer Discussion List

www.acor.org
Click on Mailing Lists to access this public online support group that provides information and community to its members.

Medline Plus: Male Breast Cancer

www.nlm.nih.gov/medlineplus/malebreastcancer.html
Site provides a clearinghouse for information and resources about breast cancer in men from credible sources.

Health Insurance

Thinking about the fine print of an insurance policy is probably the last thing you want to worry about when you are going through diagnosis and treatment for breast cancer. However, it is very important to know both how much coverage you have and what is required of you in order to receive full coverage.

First, read your policy before you begin any treatment. Then, read it again. Make sure you understand every word of the policy. Call your insurance company and ask them to explain, in language you can understand, any portions of the policy you don’t understand. Your policy is your contract with the insurance company and will govern what care you get. An insurance company is a business committed to its own interests. You must be just as prepared to represent and protect your own interests.

Example: Does your policy cover the cost of a second opinion, if you want one? Or, does your policy require that you get a second opinion before they will cover the costs of particular treatments?

Health insurance is like car insurance or home insurance. There are different packages and types of coverage. Your plan may not pay for all the health care you need. You must learn the details of your health plan package so that you can plan your budget and know how much you might have to pay.

Health insurance policies can be difficult to understand. Do not hesitate to call your insurance company and have them explain if you don’t understand something. Your doctor or nurse also may be able to help. You might also call your state Department of Insurance. In North Carolina, call 800.546.5664 or 919.807.6750.

What are some of the differences between group plans and individual plans?

This issue refers to how the plan is purchased—through a group or individually.

Group insurance. Employers are the main source of group insurance coverage, but some other organizations (professional associations, unions, churches, etc.) may also offer group plans. Often, monthly premiums under group plans tend to be lower than for individual plans.

A plus of group plans is that pre-existing conditions may not be taken into account when you enroll. If they are, the group insurer is only allowed to look back at an individual’s health for the six months prior to enrollment in the health plan. If you do have a pre-existing condition, insurance coverage for health care can be “excluded” (meaning that insurance will not cover treatment) for up to 12 months after enrollment. However, it is important to know that any previous, creditable insurance coverage can be used as credit toward the 12-month period.

Individual Insurance. Purchasing insurance as an individual—rather than as a member of a group—often results in higher premiums, but not always. If you can tailor benefits to suit your individual needs, it may be more helpful for you to buy an individual plan.

As with group insurance, there may be limits on coverage based on pre-existing conditions. Insurers are allowed to look back at an individual’s health for the 12 months prior to enrollment in the health plan, and exclude paying for care related to that condition for 12 months after enrollment. However, you can get credit for prior continuous coverage that was not interrupted by a break of 63 or more days in a row.

In general, North Carolina residents are not necessarily guaranteed the right to buy an individual health plan. Some insurance companies can decline you if they determine that you are not an “acceptable risk.” Some insurance companies, such as Blue Cross and Blue Shield of North Carolina, do offer an “open access” plan for people who are not able to purchase insurance anywhere else. However, you may be charged considerably higher premiums because of your health status.

Another health insurance option is a “high-risk pool.” Recently, North Carolina joined other states which have instituted a statewide insurance plan for “high risk” individuals who have been rejected for coverage or offered individual coverage at very high rates.

Inclusive Health, also known as the North Carolina Health Insurance Risk Pool (ncHIrP), provides affordable, individual health insurance coverage for North Carolinians who do not have access to an employer health plan and face higher premiums due to a pre-existing medical condition. It serves as North Carolina’s alternative mechanism for those who have exhausted their COBRA continuation coverage. It will also offer coverage to individuals who are federally defined HIPAA eligibles or who qualify as a result of loss of employment due to the effects of international trade under the Health Coverage Tax Credit.

For help with sorting out different health plans and their coverage policies, see the Resources at the end of this section.

What type of health insurance is available that is paid for by the government?

There are also two health insurance plans paid for by the government: Medicare and Medicaid.

Medicare is health insurance paid for by the federal government and funded through the Social Security program. It is not just for people over 65 years of age. People are eligible for Medicare if they meet ANY of the following criteria:

• 65 years or older and entitled to Social Security
• Totally disabled and collecting Social Security, regardless of age
• Legally blind
• On renal dialysis, regardless of age

Medicaid is a health insurance program funded jointly by the federal and state governments. To be eligible for Medicaid, people must meet certain low income requirements. The local county Department of Social Services can help determine eligibility and has applications for Medicaid. These requirements differ from state to state.

For more information about health plans, Medicare or Medicaid, see the Resources at the end of this section.

What can I do if my insurance claim is denied?

Call the insurance company to find out why the claim was denied. In some cases, it may just have been a paperwork error. Sometimes there are differences between what your policy is supposed to cover and what the insurance company offers to cover (sometimes referred to as “policy interpretation”). If you challenge the company’s decision, you will probably be referred to the claims department. If you are not satisfied with the information you are given by a customer service representative, ask to speak with a supervisor or manager.

Write down everything. Do not rely on verbal commitments. If you don’t understand what the insurance company representative said, talk to him or her until you do understand. If possible, get them to write it down. Keep records of what was said, when, and who you talked with. Also, note the claim number and policy and/or procedure code on all correspondence. If necessary, send a confirmation letter describing the verbal communication you had with company representatives, and name them. This paper trail can be important evidence in negotiating with insurance companies.

Identify a “point person” in your insurance company’s customer service department. Try to speak with the same person each time you call. This should help with communication if the person is familiar with your situation.

Check the facts. Review the policy to make sure that pre-certification, authorizations and other procedures required by the insurer are followed.

Ask for a doctor’s help if fees, charges or procedures are questioned. Most healthcare providers and their staff are experienced in working with insurance companies. Ask your doctor to write a letter to the insurance company documenting and/or justifying the charges, and keep a copy for yourself.

Try to negotiate fees with your doctors and healthcare providers. Most insurance policies will cover costs within certain limits (charges they consider “usual and customary”). If your physician charges are higher, you may want to discuss this with your doctor. Some doctors will discount their fees or “forgive” the additional amount that you would otherwise have to pay. If your physician agrees to do this, you may need to make a follow-up call with billing services if you are still charged for the entire bill.

Ask for a formal review of the denied claim. Often, claims that were denied at first are paid in later reviews. If this fails, ask for an appeal of the review with outside oncology experts.

If you need assistance with processing a claim, contact the North Carolina (or your state’s) Department of Insurance. The Department of Insurance can tell you if there are state laws that apply to your case and provide some counseling. See the Resources at the end of this section for contact information.

Find out if your hospital or cancer center has patient representatives. They usually act as patient advocates in case of a dispute with the insurance company. The patient representative can contact your insurance company to challenge or negotiate a denied claim.

If the above steps fail to help with getting reimbursement for a claim that you and your physician think is justified, a final possibility is to contact a lawyer. Choose a lawyer with experience in health care and health insurance.

There are organizations that can help with negotiating claims or with finding a lawyer. See the Resources at the end of this section.

If I get sick, can my health insurance be canceled?

In North Carolina, your health insurance cannot be canceled because you get sick. This applies to both group plans and individual plans. Most health insurance is guaranteed renewable. You have this protection provided you pay the premiums, do not defraud the company, and, in the case of managed care plans, continue to live in the plan service area.

However, if you have individual health insurance, when it is time for you to renew your coverage your premiums can increase quite a bit as you age or if your health declines.

Some insurance companies sell temporary health insurance policies, sometimes called Short Term Major Medical. They will only cover you for a limited time, such as six months. These policies are not guaranteed renewable.

Note that health insurance contracts can be canceled within the first two years if the applicant provides incorrect answers to the application questions and the company’s decision to issue the policy was based on the incorrect answers. Always verify that answers and information submitted on any application for insurance are complete and accurate.

If I get breast cancer, do I need to stay in my job to keep my health insurance? Or can I take my health insurance with me?

The passage of the Health Insurance Portability and Accountability Act (HIPAA) has made it easier to change employers without losing health insurance coverage for your (and your family’s) medical conditions.

If you leave your job or lose your job, you may be able to remain in your old group plan for a certain length of time. This is called COBRA continuation coverage (if your employer has 20 or more employees) or state continuation coverage (if your employer has 2-19 employees). You will need to pay the entire cost of the premiums (employer and employee share).

COBRA continuation coverage generally lasts 18 months. In addition, if you join a new health plan and the new plan has a waiting period or a pre-existing condition exclusion period (the time during which a health plan will not pay for covered care relating to a pre-existing condition), you can keep whatever COBRA coverage you have left during that period. (Note: Once you have elected COBRA, you will not be eligible for special enrollment in another group health plan, such as a spouse’s plan, until all COBRA coverage available is exhausted.)

To qualify for COBRA continuation coverage, you must meet three criteria:

• First, you must work for an employer with 20 or more employees. If you work for an employer with 2-19 employees and your employer offered health benefits, you may qualify for state continuation coverage.
• Second, you must be covered under the employer’s group health plan as an employee or as the spouse or dependent child of an employee.
• Third, you must have a qualifying event that would cause you to lose your group health coverage (such as termination of employment, or reduction in number of hours worked).

Keep in mind that, as a breast cancer survivor, it may be very difficult to obtain affordable coverage after the COBRA period ends, unless you can join another group plan or obtain coverage through a spouse’s group plan.

Will I be able to get health insurance after a breast cancer diagnosis?

While dealing with insurance companies during treatment for breast cancer is stressful enough, you may need to be prepared for the challenge of obtaining health insurance coverage after treatment has been completed. It can be very difficult to find affordable health insurance after you have been diagnosed with a serious medical condition such as breast cancer.

If you currently have a health insurance plan that is meeting your needs--if at all possible--try to stay with this plan. Your policy cannot be canceled if you become sick. However, if you have an individually-purchased health plan, your premiums can be increased when you renew coverage. This is not true for group plans—your premiums cannot be increased due to your health status.

If you change jobs and work for a company that does not offer health insurance benefits, or if you become unemployed, your challenge is magnified. You are faced with the need to obtain health insurance coverage as well as the financial burden of paying for it yourself. You should be able to obtain COBRA or state continuation coverage for 18 months after you end your job, if your previous job offered group health benefits. Do not wait until the COBRA or state continuation coverage expires to begin your search for alternative coverage.

Your best bet for finding new health insurance coverage is to try to get in a group health plan through an employer, obtain coverage through a spouse’s group plan, look into group insurance options through professional, fraternal or political organizations, or look into North Carolina Health Insurance High Risk Pool (described earlier in this section and in the Resources).

If you are self-employed, or plan to be, consider getting health insurance coverage through a “small employer group plan.” Insurers must offer group plans to small employers who have 2 to 50 employees. Some insurance companies offer these plans to self-employed people who have no employees. Self-employed individuals do not have access to all plans, but they must be offered two standardized plans established by North Carolina law (Standard and Basic health plans) regardless of their health status.

When applying as a small employer or self-employed person, be prepared to show tax forms and business documents indicating this status. Unfortunately, health insurance companies can still base the cost of the plan on the health status of the self-employed person or small employer group. However, state law (North Carolina’s Small Employer Group Health Coverage Reform Act) establishes limits on how much insurers can vary premiums from one small employer to another.

What if I don’t have health insurance and can’t afford to pay for it?

If you cannot afford health insurance, and aren’t able to join a group health plan where the premiums will be paid by the employer, look for free or low-cost health care services. There are several programs to help with diagnosis, treatment, medications, and other breast cancer-related services in North Carolina. See Chapter 7: Financial and Other Assistance.

If you meet certain low-income guidelines, you may be eligible for Medicaid. See your local county Department of Social Services for guidelines or check the Resources at the end of this section.

If you are disabled due to your breast cancer and are unable to maintain employment, you may be eligible for Social Security Disability (SSD) or Supplemental Security Income (SSI).

Disability Insurance

You become eligible for disability when you cannot continue to work at your job because of illness or injury. If you have disability insurance, you may be able to receive cash benefits during your period of disability. If you do not have disability insurance, you may be eligible for a government disability program.

How does disability insurance work?

Disability insurance replaces a portion of your income if you are too sick or injured to continue working in your job. Disability insurance can be offered through a group plan or individual policy. To qualify for benefits, the insured person must meet the policy’s definition of disability. Some policies only cover disabilities from accidental injury, not from sickness. Read your policy carefully.

The disability insurance policy may have an “elimination” or “waiting” period following the beginning of disability, where benefits are not payable. In addition, the policy may deny coverage for claims due to pre-existing conditions.

A policy may state that an Own Occupation disability provides benefits when an insured is unable to perform the usual and customary duties of their own occupation. However, some policies have an Any Occupation definition, where an insured person is eligible for benefits when they cannot perform the duties of any occupation for which they have education and training. Long-term policies (benefits for more than a year or two) often use this definition. It can be considerably more difficult to qualify for benefits under an “any occupation” definition instead of an “own occupation” definition.

For more information about disability insurance, see the Resources at the end of this section.

What can I do if I’m disabled and don’t have disability insurance?

If you are disabled, and your disability will last six months or more, you may be eligible to get disability benefits through the federal government. There are two programs available: Social Security Disability Insurance (SSD; also called SSDI) and Supplemental Security Income (SSI).

When you apply for either program, you will need to provide medical and other information and meet Social Security’s definition of disability. Generally, it takes between 90 to 120 days to process claims for disability benefits. You can shorten the process by having the required information ready when you apply. Regardless, get the application in as soon as possible after you become disabled. If you are rejected, appeal the decision.

Important to Know: It is not uncommon to be rejected for SSD or SSI the first time around, and for 2-3 subsequent appeals. Your appeal may then go to a hearing before a judge, where it is more likely to be approved. It can take a year or more from the time you submit an application to be approved, if you are approved at all. The following may help your case:

• Write a letter to your congressman or congresswoman or Senator in your state.
• Get letters from your doctors stating your condition and prognosis. Keep track of your doctors’ appointments and any visits to the emergency room.
• Get copies of all your tests and labwork.

Social Security Disability (SSD) pays benefits to you and certain members of your family if you have earned a certain amount of money in the past 10 years and had Social Security taken out of your paycheck (for people younger than 31, less is required). You must also meet a strict definition of disability. After two years on SSD, you are eligible for Medicare.

Supplemental Security Income (SSI) pays benefits based on financial need. No work history is required but you must have a low income and low resources. The program is designed to help aged, blind and disabled people who have little or no income. If you get SSI, you usually get food stamps and Medicaid too.

See the Resources at the end of this section for where to find more information about SSD and SSI.

Material for the above sections was adapted in part from educational publications and fact sheets about health insurance from the Susan G. Komen for the Cure, Breast Cancer Network of Strength, the Georgetown University Institute for Healthcare Research and Policy, the U.S. Department of Labor, the North Carolina Department of Insurance, Social Security Online, Breast Cancer Action, the National Breast Cancer Coalition, and CancerCare, Inc.

Life Insurance

After a cancer diagnosis, there are two issues you may want to consider regarding life insurance: the ability to “cash in your policy” and whether you will be able to obtain a policy should you desire one in the future.

What is meant by “cashing in a life insurance policy”?

If you have a terminal illness and need funds for living or medical expenses, you may be able to receive cash from your life insurance policy by selling the policy (called a viatical) or by taking out a loan against the face value of the policy. Viatical settlements are regulated by state Insurance Departments, and requirements will differ from state to state.

Not all types of insurance policies can be sold or borrowed against. Most types of life insurance policies can qualify. The most common are Universal Life, Whole Life, and convertible Term Life. Other Term Life Insurance policies may not qualify. Call your state Department of Insurance if you are not sure what your policy is or if your policy qualifies. (Note: When the viatical settlement has been completed, it terminates the beneficiaries’ rights to collect on the life insurance policy when the insured person dies. Also, once a policy is sold, it is usually not reversible.)

Before making any of the decisions listed above, you may want to talk to a lawyer, a financial planner and/or your state Department of Insurance. Make sure the lawyer is experienced in life insurance work. See the Resources for help finding one.

Will I be able to get a life insurance policy after a cancer diagnosis?

Many insurance companies charge very high rates for breast cancer survivors. Check around for policies with favorable rates. One option is for you or your spouse to work for a large organization that offers group life insurance, where there may be less restrictions on who is accepted.

Another idea is to purchase an annuity. The monies earned can be used in the same way you would use a life insurance policy. The North Carolina Department of Insurance has more information about annuities. You may want to speak with a financial planner. Consider hiring one who charges by the hour, rather than by commission; they may give the most unbiased advice as to which companies have the best annuities.

Resources

Organizations

Alliance of Claims Assistance Professionals

877.275.8765 (toll-free)
www.claims.org
Offers assistance in getting insurers to pay for experimental treatments, as well as other reimbursement and billing problems.

American Association of Retired Persons (AARP)

800.424.3410
www.aarp.org
North Carolina Chapter:
919.755.9757 or 800.523.5800
www.aarp.org/statepages/nc.html
A resource for people having problems with health insurance companies and for help navigating the health care system. Provides free publications for those over age 50 and caregivers.

Centers for Medicare and Medicaid

877.267.2323 (toll-free) or 866.226.1819 (TTY)
www.cms.hhs.gov
This U.S. government agency administers the Medicare and Medicaid programs. Has information about who is eligible and what plans cover. For more Medicare information, call 800.444.4606 or see www.medicare.gov. For more Medicaid information in North Carolina, call 800.662.7030 or see www.dhhs.state.nc.us/dma.

Medicare Rights Center

800.333.4114
www.medicarerights.org
Provides free counseling services to people with Medicare questions or problems and provides telephone hotline services to individuals who need answers to Medicare questions or help securing coverage and getting the health care they need.

National Coalition for Cancer Survivorship

877.NCCS.YES (877.622.7937)
www.canceradvocacy.org
In the Publications section of its web site, NCCS offers a “What Cancer Survivors Need to Know about Health Insurance” booklet that provides a clear understanding of health insurance and how to receive maximum reimbursement on claims.

National Insurance Consumer Helpline

800.942.4242
A general information source for all types of insurance-related issues, including life and health insurance.

National Organization of Social Security Claimants’ Representatives (NOSSCR)

800.431.2804
www.nosscr.org
An association of attorneys and advocates that represent Social Security and Supplemental Security Income claimants. Free referral service to NOSSCR specialty lawyers.

North Carolina Bar Association (Raleigh, NC)

919.677.0561 or 800.662.7660
www.ncbar.org
Offers the North Carolina Lawyer Referral Service for help finding a lawyer. For assistance with finding a pro bono (free or reduced cost) attorney, try www.lawhelp.org/nc.

North Carolina Department of Insurance (Raleigh, NC)

800.546.5664 or 919.807.6750
www.ncdoi.com
Offers consumer guides, hotlines, counseling for insurance matters (health, life, disability, cancer, viaticals, annuities and more) and insurance claims. You can request an independent medical review for health insurance denials of coverage or file a complaint online.

North Carolina Health Insurance Risk Pool (NCHIRP)

866.665.2117
www.inclusivehealth.org
Inclusive Health, also known as North Carolina Health Insurance Risk Pool, provides affordable, individual health insurance coverage for North Carolinians who do not have access to an employer health plan and face higher premiums due to a pre-existing medical condition. It also serves as North Carolina’s alternative mechanism for those who have exhausted their COBRA continuation coverage.

Patient Advocate Foundation (PAF)

800.532.5274
www.patientadvocate.org
This organization serves as an active liaison between the patient and their insurer, employer and/or creditors to help with insurance issues, job discrimination or debt crisis matters relative to their diagnosis.

Seniors’ Health Insurance Information Program (SHIIP)

800.443.9354 or 919.807.6900
www.ncdoi.consumer/shiip/shiip.asp
A program of the NC Department of Insurance. Answers questions and counsels senior citizens about Medicare, Medicare supplements, long-term care insurance and other health insurance concerns. Has a comparison of Medicare supplement plans.

U.S. Department of Labor

866.4.USA.DOL(toll-free)
www.dol.gov/ebsa/consumer_info_health.html
The U.S. Department of Labor has fact sheets about COBRA, HIPAA, women’s health and cancer rights protections, health plans and health benefits.

U.S. Social Security Administration, Disability Programs

800.772.1213
www.ssa.gov/disability
Administers the SSD and SSI government disability programs. Call to learn more about the programs or to apply. You can also apply online.

Web Sites

Insurance and Other Financial Issues, from Susan G. Komen for the Cure

http://ww5.komen.org/BreastCancer/InsuranceandOtherFinancialIssues.html
Provides information about health, disability and long-term care insurance, and other financial issues related to breast cancer care.

Life Insurance Settlement Association

www.thevoiceoftheindustry.com
Provides information about life insurance settlements such as viaticals.

Managing Your Health Insurance, from breastcancer.org

www.breastcancer.org/tips/paying/manage_insurance.jsp
Provides helpful tips and information about managing your health insurance, reducing medical costs and more.

Questions Women With Breast Cancer Frequently Ask about Health Insurance Benefits

www.hopkinsbreastcenter.org/library/health_insurance/faq.shtml
Helpful information about health insurance coverage questions for women with breast cancer, including about reconstruction.

Legal Issues

Legal Issues and Health Insurance

A health insurance company’s decision about insurance coverage for breast cancer treatment and services is often based on the cost of the service, rather than on what the patient’s doctor prescribes as medically appropriate and necessary. Most health insurance companies are businesses committed to their own interests. You must be equally prepared to represent and protect your interests.

Breast cancer patients are sometimes unaware that they can appeal an insurance company’s decision to deny coverage. Also, women (and men) in this situation may seek expert advice too late—after they have exhausted the appeals that a knowledgeable advocate or lawyer may have been able to pursue successfully. If the appeal was related to treatment, and an individual is not able to pay out-of-pocket, this situation could affect survival.

If you have been denied coverage and your life or health is in jeopardy, you should consider consulting a lawyer who is knowledgeable about health insurance law. A letter from a lawyer or consumer advocate is often taken more seriously by health insurance companies than a letter from a patient. These letters can sometimes speed up reversing a denial of coverage.

If you cannot afford a lawyer, look for a pro bono attorney (attorneys who provide their service at no cost or at reduced cost) or contact a consumer advocacy group. See the Resources at end of this section.

Also, see Insurance Issues section for more tips about how to appeal a denial of coverage with a health insurance company.

Patient Rights

Patient’s Bill of Rights. The Patient’s Bill of Rights was adopted by the American Hospital Association in 1973 and revised in 1992. This document describes the rights of patients and the responsibilities that hospitals and healthcare providers have to support these rights and deliver effective health care. Most hospitals should have a copy of the Patient’s Bill of Rights or contact the American Cancer Society at 800.ACS.2345 or www.cancer.org.

Informed Consent. Prior to performing most procedures, your physician will ask you to sign an Informed Consent form. (Your doctor will explain what the procedures are and the risks and benefits.) By signing the form, you agree to the procedures, and that you understand the risks and benefits. You should have an opportunity to ask all of your questions. Your doctor will also explain what choices you have regarding available treatments. Make sure you read the consent form very carefully before you sign it. If you do not agree with any part of it, cross out that part and initial it. When you sign the form, you are giving permission for your doctor to treat you. You are not absolving your doctor of negligence.

Access to your medical record. You have a right to obtain an updated copy of your medical record. You will have to sign a release form to get that copy. The person who works in your doctor’s office can help you fill out the papers. You might have to pay a small fee to obtain your records. It is a good idea for you to keep current copies of all your medical records.

Breast Cancer Treatment Rights

The Women’s Health and Cancer Rights Act of 1998 (WHCRA)

This federal law requires health insurance plans to cover reconstructive surgery after mastectomy, as well as implants and other work needed to make the other breast symmetrical. The law applies both to persons covered under group health plans and to persons with individual health insurance coverage.

WHCRA does not require health plans or issuers to pay for mastectomies. If a health plan or health insurance company chooses to cover mastectomies, then the plan is generally subject to WHCRA requirements. If WHCRA applies to you, and if you are receiving insurance benefits for a mastectomy and plan to have breast reconstruction, coverage must be provided for:

• Reconstruction of the breast on which the mastectomy has been performed;
• Surgery and reconstruction of the other breast to produce a symmetrical appearance;
• Prostheses (e.g., breast form); and
• Treatment for physical complications of the mastectomy, including lymphedema.

Breast and Cervical Cancer Treatment Act (2000)

This law guarantees medical treatment to low-income, uninsured women screened for and subsequently diagnosed with breast or cervical cancer through the North Carolina Breast and Cervical Cancer Control Plan (BCCCP) program. BCCCP is a program providing free mammograms, clinical breast exams and other tests to income-eligible women through local health departments. It is also available in other states. For more information about NC BCCCP, see Chapter 7: Financial and Other Assistance.

Other Laws passed in North Carolina

• Health insurance companies must pay for mammograms and Pap tests. This does not cover all health insurance providers. Check with your insurance company or employer.
• You and your doctor, rather than your health insurance company, can decide how long you will stay in the hospital after a mastectomy.
• Health insurance companies or employers are not allowed to deny you coverage or employment based on genetic information.

Life Planning

All adults should designate the person(s) who will make decisions for them if they become unable to act on their own behalf. This is called an advance directive, which is a legal document that allows people to convey their decisions about end-of-life care ahead of time. The purpose of advance directives is to let your loved ones and your healthcare providers know what you want while you are able to communicate your preferences for care. See Hospice Care & End of Life Issues section for more information. Below are a few other legal documents that assist in life planning.

Last Will and Testament (Will). A Will is a personal plan instructing your survivors or beneficiaries about your wishes. Every adult should have a legal Will. You can be as specific or as general as you wish. Some terms to address in the Will may include provisions for who will take care of your children and who will receive your assets after you die. This is a legal document that should be written with the aid of a lawyer. It can be changed at any time. In North Carolina, Wills should be witnessed by two individuals (unrelated to the person making the Will) and must be notarized in the presence of all parties.

Trusts and Estate Planning. A trust is a legal arrangement under which you, as the grantor, transfer money or other property to a trustee. The trustee will hold and eventually distribute the property for the benefit of one or more beneficiaries (people receiving the benefits). The trustee manages the property placed in the trust and follows your instructions concerning the management and distribution of the property.

Trusts can be broadly categorized as either testamentary trusts or living trusts. A testamentary trust is created within a Will and takes effect only at death. A living trust is a trust that you put in place during your lifetime.

Employment Issues

Many people are already in the workforce when they are diagnosed with cancer. For many, work is a source of fulfillment and financial security. As long as you are able to work, and you are not compromising your health during treatment, there is no reason for you to feel that you should stop.

Tips for Working During Cancer Treatment

Telling co-workers. In some settings, co-workers will react to your cancer diagnosis and absences with understanding and helpfulness. Other co-workers may feel uncomfortable around you because of your cancer, or they may resent taking on extra duties because of your absence. How open you are with your co-workers about your condition is a personal decision. In some environments, it won’t benefit you to share details. However, many women with breast cancer say they are glad they shared information about their illness with people at work.

Work schedule, calendar and duties log. You may want to make logs of your usual work schedule and duties, and refer to it when organizing any flextime, shifted duties or time off. You may also want to make a detailed list of job duties so that you are able to direct others in handling situations and procedures while you’re out of the office.

Worries about discrimination. Even though the public’s understanding of cancer is generally improving, some prejudices and wariness remain in the workplace. This may be in part due to competitiveness and economic pressures and fears. If this situation arises, you may want to keep records of your contacts with office personnel, including the names of people with whom you have spoken about your illness, the date and place you spoke, and the information you received. It’s also a good idea to keep documentation of your job performance evaluations.

Reasonable accommodations. Employers are not required to lower standards in order to accommodate any one employee. However, an employer is required to reasonably accommodate a qualified applicant or employee with a disability unless the employer can show it would be an undue hardship to do so. Examples of reasonable accommodations may include:

• providing or modifying equipment or devices
• restructuing a job
• offering part-time or modified work schedules
• reassigning an employee to a vacant position
• adjusting or modifying examinations, training materials or policies
• providing readers and/or interpreters
• making the workplace readily accessible to and usable by people with disabilities.

Tips on Returning to Work After Cancer Treatment

If you are able to return to work shortly after your treatment, you may find that it helps you maintain your identity and even boost your self-esteem. Cancer can be isolating, and it can be a comfort to be around other people. Check with your employer about options such as flextime, job-sharing or telecommuting if it will help you perform your duties. Some people with cancer who are re-entering the workforce may want to seek counseling to help readjust.

When writing a resume, focus on skills and experiences rather than chronology if there was a long period of time when you were out of work due to your illness. Rather than organizing your resume by dates of employment, focus on areas of expertise and experience.

When going for an interview, there is no need to volunteer your history of cancer. It is not legal for an employer to ask you questions about your health that do not directly relate to job functions. Consider your cancer history as any other piece of personal information, which is generally not appropriate to share during a job interview. However, if the question arises, be truthful about your medical history, especially on insurance forms.

If you are seeking employment, if may be helpful to try large companies that are more likely to have encountered employees with situations similar to your own. In addition, it may be helpful to ask your doctor for a letter that supports your current situation and ability to work.

It may help employers feel more secure about hiring you if an issue relating to your health arises.

Focus on your current health. If your current employer or potential employer is aware of your cancer history, emphasize your current abilities and skills, rather than dwelling on what you were or were not able to do in the past.

Employment Discrimination

You have the same rights as anyone else in the workplace and should be provided equal opportunities, regardless of whether or not you talk about your cancer with people at work. Hiring, promotion and treatment in the workplace should depend entirely on ability and qualifications. As long as you are able to fulfill your job duties, you cannot be fired for being sick. Also, you should not have to accept a position you would not have considered before your illness.

Some common forms of discrimination are refusing to hire, demoting or denying promotions, not allowing time off for medical appointments, or suggesting that the person with cancer would be “better off” not continuing to work.

If you suspect discrimination, consider following these steps:

Work with your supervisor or human resources department to resolve the problem informally. Under the Americans with Disabilities Act, employers are required to make reasonable accommodations. If you took this issue to court, the judge would ask that you and your employer try to work it out this way first. Is flextime an option? Are there accommodations you can suggest to your employer that will make your work life easier? Open communication between you and your employer about your needs and their needs may help to resolve what might otherwise turn into an unpleasant situation.

Get support from others. Perhaps a local cancer group or health professional would be able to provide education for your employer about cancer and workplace issues. You may want to speak to an attorney specializing in workplace discrimination who can advise you on how to proceed. If there are other cancer survivors in the workplace, see how they have dealt with the issue.

Keep written records of actions. Write down dates and times of discriminatory actions and conversations that you have with your employer. Be precise and detailed in your notes.

Your rights are protected by the Americans with Disabilities Act (if your company has more than 15 employees). Contact the Equal Employment Opportunity Commission (EEOC) if you wish to file a complaint. Be aware of filing deadlines. You have 180 days from the date of discrimination to file your complaint formally. That could be the date you were fired, date you were denied promotion, or the date your job responsibilities changed. After the 180-day deadline has passed, it is difficult to file a complaint.

Think carefully about your goals. If you do decide to take legal action, consider the consequences of such an action. Ask yourself whether the sometimes long and drawn-out process of a lawsuit is worth it, and how you would feel if you lost the decision. It is important to examine these issues for yourself carefully and understand the drawbacks of what you are getting into. It may also be possible for you to let go of the anger and move on.

Information in the employment section was adapted in part from Tips on Returning to Work After Cancer Treatment, American Cancer Society (800.ACS.2345 or www.cancer.org) and Ways to Advocate for Yourself or Someone Else Who Has Cancer, CancerCare, Inc. (800.813.HOPE or www.cancercare.org).

Federal Laws that Cancer Patients May Want to Know About

While treatment and recovery concerns are likely to be at the top of the priority list when you learn you have breast cancer, you might want to be familiar with other laws that protect your rights.

Health Insurance Portability and Accountability Act (HIPAA)

The federal government passed this Act in 1996 to help improve health insurance coverage for people with pre-existing conditions who change jobs or lose health insurance coverage. Before HIPAA was passed, many people were excluded from health insurance coverage because of previous health problems, even if the problems occurred many years earlier.

HIPAA ensures that people seeking group health insurance will have full coverage within a relatively short period of time. If you have had breast cancer or another serious medical condition, it is important to avoid a break in coverage of 63 days or more. You can apply for COBRA continuation coverage to bridge the gap between jobs. If a break in coverage occurs, you might have to wait six months or more before your insurance will cover you. See Insurance Issues section for more information.

A second part of the HIPAA bill deals with the protection of privacy of medical information. Some of the recent paperwork changes you may have noticed in hospitals or doctor’s offices (more forms to sign before receiving care) relate to this part of HIPAA. The new laws guarantee the right of patients to see and obtain copies of their medical records and request corrections if they see mistakes. They also regulate and protect access to medical information (particularly computer information) by outsiders.

Americans with Disabilities Act (ADA)

This federal law states that an employer cannot refuse to hire or refuse to continue to employ a person with a disability (including cancer), as long as that person is able and qualified to do the job. The law applies to any private employer, including state and local governments, with 15 or more employees. The ADA requires employers to treat all employees the same. The law applies to all aspects of the employment process: the job application procedure, hiring, promotion, discharge, employee compensation, job training, leaves of absence, sick leave, other leave and fringe benefits.

The Federal Rehabilitation Act (fRA)

The FRA applies the standards set by the ADA to employees of the federal government.

Family and Medical Leave Act of 1993 (FMLA)

This federal law was passed to make sure people have time off from work to take care of themselves or a family member in need. The law requires some employers to provide up to 12 weeks of unpaid, job-protected leave to eligible employees for certain family and medical reasons.

FMLA applies to employers with 50 or more employees.

For more information about the above laws, see the Resources.

Resources

Organizations

Aging With Dignity

888.5.WISHES
www.agingwithdignity.org
Advocates for the needs of elders and their caregivers, with emphasis on improving care for those at the end of life. Offers the Five Wishes advance directive (legally valid in North Carolina).

American Bar Association Commission on Women in the Profession

312.988.5715
www.abanet.org/women/breastcancer.html
Sponsors the Breast Cancer Legal Advocacy Initiative, offering information, resources and breast cancer pro bono (free) lawyer referrals throughout the country. Publishes the brochure, “Ten Steps to Protecting the Legal Rights of Breast Cancer Patients.”

Cancer Legal Resource Center

213.736.1455 or 866.THE.CLRC
www.disabilityrightslegalcenter.org
A program of the Disability Rights Legal Center provides a telephone hotline, information and educational outreach on cancer-related legal issues to people with cancer, their families, friends and employers.

Caring Connections

703.837.1500 or 800.658.8898
www.caringinfo.org
Helps patients and families participate in end-of-life decision making. Has educational booklets and videos about end-of-life issues. Provides state-specific living wills and medical powers of attorney.

Equal Employment Opportunities Commission (EEOC)

704.344.6682 or 800.669.4000800.669.6820 (TTY)
www.eeoc.gov
Has information about employment, job discrimination,federal laws such as the Americans with Disabilities Act,how to file a charge of employment discrimination, and more. Hotline is also for Spanish speakers.

Job Accommodation Network

800.ADA.WORK (800.526.7234)
www.jan.wvu.edu
An international toll-free consulting service that provides information about accommodating people with disabilities on the job and their employability.

Judges and Lawyers Breast Cancer Alert

212.289.9720 or 212.759.6630 (Hotline)
www.jalbca.org
Provides relevant breast cancer information and peer support hotline for legal professionals.

National Coalition for Cancer Survivorship

877.NCCS.YES (877.622.7937)
www.canceradvocacy.org/resources/publications
Offers free booklets about cancer, health insurance and employment rights for cancer survivors.

National Partnership for Women and Families

202.986.2600
www.nationalpartnership.org
Has information about workplace discrimination, the Family and Medical Leave Act, and other employment topics.

North Carolina Bar Association

919.677.8574 or 800.662.7660
www.ncbar.org
Offers the North Carolina Lawyer Referral Service to help find a lawyer (see www.ncbar.org/public/lrs). For pro bono (free or reduced cost) attorney services, see www.lawhelp.org/nc.

Patient Advocate Foundation (PAF)

800.532.5274
www.patientadvocate.org
Serves as an active liaison between the patient and their insurer, employer and/or creditors to help with insurance issues, job discrimination and debt crisis matters relating to their diagnosis. Offers free booklets about job discrimination and other issues.

U.S. Department of Justice

800.514.0301 or 800.514.0383 (TTY)
www.usdoj.gov/crt/ada/adahom1.htm
Site contains comprehensive information about the Americans with Disabilities Act.

Web Sites

Breast Cancer in the Workplace, from Breast Cancer Network of Strength

www.networkofstrength.org/support/selfcare/workplace.php
Brief discussion of issues and concerns of breast cancer survivors and the workplace.

Cancer and Careers

www.cancerandcareers.org
A resource for working women with cancer and their employers, coworkers and caregivers.

Where Can I Go to Find Support?

Family, friends, neighbors and co-workers. The emotional and practical support of your family and friends can be helpful and comforting. It can also be stressful. People who do not have cancer can sometimes say foolish or hurtful things or act in a way that does not feel helpful to you. You will feel better if you can let others know exactly what you need and how you prefer to be helped.

Support groups. You can find groups at hospitals, health clinics, the American Cancer Society and other support centers. Several scientific studies have shown positive benefits to breast cancer patients who participate in support groups. (See Support Groups in North Carolina to find a group in your area or check with your local hospital, cancer center or American Cancer Society office).

Buddy system. Also called “peer support,” this type of support connects newly-diagnosed patients with survivors who offer emotional support, guidance and camaraderie. Women Building Bridges (Chapter 10: Women Building Bridges), a peer support program created for women in North Carolina, is one such program. The American Cancer Society’s Reach to Recovery program is another. Hospitals and cancer centers may offer similar programs. Nationally, Breast Cancer Network of Strength and other breast cancer and cancer organizations offer peer support programs (see Resources at the end of this section).

Individual counseling is another way for you to get the emotional support you need while coping with a diagnosis. Seeing a counselor does not mean that something is wrong with you. It is healthy for you to recognize when you need help. Check with your health insurance plan for benefits before you make an appointment with a counselor. If you do not have health insurance, you can check with the social worker or nurse at your local hospital, a clinic or women’s center to find out if they offer free or low-cost counseling services. Some counselors specialize in working with individuals who have cancer.

Talking to a religious advisor is another source of counseling. Some women find that a diagnosis of cancer brings out a spiritual crisis. It is common to ask, “Why me?” Your spiritual counselor can offer you support in sorting through some of the deep concerns that can arise about your religion or values.

Online support groups are sometimes called electronic mailing lists, listservs or discussion groups. They offer information, support and community to their participants, who usually correspond through e-mail. (Members send in their comments, which are sent to all other members of the group.) Some online support group web sites also have message boards, survivor stories and chat rooms. The Association of Cancer Online Resources (www.acor.org) is one such organization. BClist.org and BCmets.org are two other excellent listservs.

Resources

Organizations

American Cancer Society (ACS)

800.ACS.2345 or 866.228.4327 (TTY)

www.cancer.org

Provides information and services for all types of cancer, including breast cancer. Provides free booklets about support and coping with cancer. Available in Spanish. Survivors and caregivers can support each other through the Cancer Survivors Network (http://can.cancer.org).

Breast Cancer Network of Strength

800.221.2141 (English) or 800.986.9505 (Spanish)

www.networkofstrength.org

Offers education, support and toll-free hotline (24/7). Other services are ShareRing Network (monthly teleconference on breast cancer), and Men’s Match (for men supporting breast cancer patient), and wig/prosthesis bank for uninsured women.

Breast Friends, Inc.

404.843.0677 (support line) or 888.718.3523 (National toll-free)

www.breastfriends.org

Offers a 24-hour, toll-free, national hotline for one-to-one support, comfort and information for breast cancer patients. Also provides peer support for husbands, family members and friends.

Buddy Kemp Caring House (Charlotte, NC)

704.384.5223

http://www.presbyterian.org/health_services/cancer_center/support_services/buddy_kemp_caring_house

Serves Mecklenburg and surrounding counties. All services free to anyone. Offers support groups for breast cancer, metastatic cancer, and support for family and friends.

CancerCare

800.813.HOPE (800.813.4673)

www.cancercare.org

Staffed by social work professionals who provide support services, education and information, referrals and financial assistance resource guides. Offers a toll-free hotline for counseling and online support groups. Available in Spanish.

Cancer Hope Network

877.HOPENET (877.467.3638)

www.cancerhopenetwork.org

Has a free, confidential service that matches cancer patients to trained volunteers who have undergone a similar cancer experience. Assistance in Spanish may be available. Telephone support for caregivers.

Cancer Services, Inc. (Winston-Salem, NC)

336.760.9983 or 800.228.7421 (in North Carolina)

www.cancerservicesonline.org

Serves Forsyth, Davie, Stokes and Yadkin Counties.Offers support groups and community education programs. Offers support groups, community education, rehabilitation assistance, supplies and wigs,medical, financial and transportation assistance, and a peer support network.

Cornucopia House Cancer Support Center (Chapel Hill, NC)

919.401.9333

www.cornucopiahouse.org

Available to anyone from all areas of North Carolina. Offers free education, complementary therapy and support services (including support groups) to people with cancer, their families and friends.

I’m too Young for This! Cancer Foundation, Inc.

877.735.4673

http://i2y.com

Mid-Atlantic Region & NC Chapter Chair: Carolyn Koncal 919.370.4085 or ckoncal@i2y.com Provides education, resources, networking, peer support, advocacy and more to empower young adults affected by cancer. NC Chapter sponsors monthly “Stupid Cancer Happy Hour” in the Triangle area.

Living Beyond Breast Cancer

610.645.4567 or 888.753.LBBC (888.753.5222)

(Survivor’s Helpline)

www.lbbc.org

Addresses post-treatment needs of women with breast cancer through educational programs, newsletter, helpline for survivors and family members. Assistance available in Spanish.

Mothers Supporting Daughters with Breast Cancer

410.778.1982

www.mothersdaughters.org

Support network of mothers who have daughters with breast cancer. Helps mothers become better “care partners.”

National Cancer Institute’s Cancer Information Service

800.4.CANCER (800.422.6237) or 800.332.8615 (TTY)

www.cancer.gov

This government organization is one of the best resources available for cancer patients. Has free support booklets about supporting cancer patients. Available in Spanish.

SHARE: Self Help for Women with Breast or Ovarian Cancer

866.891.2392 (hotline)

www.sharecancersupport.org

Survivor-led organization offers a hotline where breast cancer survivors provide emotional support, information and resources about breast cancer. Available in Spanish.

Sisters Network, Inc.

713.781.0255 or 866.781.1808

www.sistersnetworkinc.org

A national organization for African American breast cancer survivors. Focuses on education, prevention, emotional support and awareness of breast cancer for African Americans. Offers support groups.

Three chapters in NC:

Piedmont Chapter (TracyCook-Brewton,Gastonia,

NC, 704.747.3319 or sisnetnc@bellsouth.net)

Triangle Chapter (Valarie Worthy, Durham, NC, 919.490.1571 or sisterstriangle@aol.com)

Southeastern NC Chapter (Irene Stuart, Lumberton, NC, 910.738.8648 or sistersnetsenc@aol.com)

Susan G. Komen for the Cure

800.I’M AWARE (800.462.9273)

www.komen.org

Foundation for breast cancer research, education, screening and treatment. Offers toll-free hotline with trained volunteers to provide breast cancer, resource and peer support information. Available in Spanish.

Vital Options International TeleSupport Cancer Network

818.788.5225 or 800.GRP.ROOM (800.477.7666)

www.vitaloptions.org

Weekly call-in cancer radio show called “The Group Room” links callers with other patients, healthcare providers, long-term survivors, and family members of patients with cancer.

The Wellness Community

888.793.9355

www.thewellnesscommunity.org

Offers a free program of emotional support, education and hope for people with cancer and their loved ones. Has several centers throughout the United States.

Web Sites

Association of Cancer Online Resources (ACOR)

www.acor.org

Hosts public online support groups. Click on “Mailing Lists.” Groups include:

• BRCA (breastcancerpatients)
• BC-SUPPORTERS or CAREGIVERS (partners/caregivers of breast cancer patients)
• CLUB-METS-BC (metastaticbreastcancer)
• CANCER-PARENTS (parent/childrenissues)
• FACING-AHEAD (facingthedeathofalovedone)
• LT-SURVIVORS (long-termsurvivors)

BCList.org

www.bclist.org

An online community for information and support. The list is unmoderated and open to discussion of any issue related to breast cancer.

BCMets.org

www.bcmets.org

An online resource for metastatic breast cancer information and support. Covers wide range of topics.

The Cancer Club

www.cancerclub.com

Founded by breast cancer survivor and author of “Not Now … I’m Having a Bad Hair Day,” Christine Clifford, this site offers support, articles and inspiration.

CancerGuide

www.cancerguide.org

A non-profit site created by cancer survivor Steve Dunn. Includes personal stories of cancer survivors.

Friends in Touch

www.friendsintouch.net

Site offers one-on-one support, message boards, a chat room, book list and resources, recipes, poetry and members’ stories.

Gillette Women’s Cancer Connection Support Network

www.gillettecancerconnect.org

Personal accounts of women’s experiences with cancer. Resources, advice, guidance for family members.

HER2 Support Group

www.her2support.org

Online information and support relating to HER2 gene, plus message boards and resource links.

Livingwithit.org

www.livingwithit.org

Online support for patients living with breast cancer, sponsored by Sanofi-Aventis. Free articles, brochures, diet and exercise tips, medical options, survivor stories. Available in Spanish.

Oncolink: Coping With Cancer

www.oncolink.org/coping

Information, resources, e-mail discussion lists, book reviews on support and breast cancer.

Shared Experience Cancer Support

www.sharedexperience.org

Learn about others’ experiences with cancer and share your own story.

WomenStories

www.womenstories.org

A non-profit organization providing information and support and inspirational stories from breast cancer survivors in video series.

Resources

Organizations

American Association of Retired Persons (AARP)

866.687.2277 or 877.434.7598 (TTY)

www.aarp.org/states/nc

North Carolina office (Raleigh, NC)

866.389.5650 or 919.508.0290 (TTY)

Provides free publications for caregivers and those over age 50. Available in Spanish.

American Cancer Society (ACS)

800.ACS.2345 or 866.228.4327 (TTY)

www.cancer.org

Provides information and services for all forms of cancer, including breast cancer, diagnosis, treatment and many other topics. Comprehensive caregiver information is available through free booklets or online.

Breast Cancer Network of Strength

800.221.2141

www.networkofstrength.org

Offers Men’s Match program, which provides support and education for men while they are supporting a wife, mother, daughter or friend through breast cancer, and free booklet and information.

Buddy Kemp Caring House (Charlotte, NC)

704.384.5223

www.presbyterian.org/health_services/cancer_center/ support_services buddy_kemp_caring_house

All services are free. Offers support groups for breast cancer, metastatic cancer, and family and friends.

CancerCare

800.813.HOPE (800.813.4673)

www.cancercare.org

Publishes, “A Helping Hand,” a free resource guide for people with cancer. Hotline available for one-on-one support with trained social workers. Caregiving information also available in Spanish.

Cornucopia House Cancer Support Center (Chapel Hill, NC)

919.401.9333

www.cornucopiahouse.org

Offers free education, companionship and support to people coping with cancer. Includes support groups for patients, partners, family members and children.

Family Caregiver Alliance

415.434.3388 or 800.445.8106

www.caregiver.org

Provides information and resources to caregivers to assist in care, planning, stress relief and locating and using community resources. Available in Spanish and Chinese.

Living Beyond Breast Cancer

610.645.4567 or 888.753.LBBC (888.753.5222) (Survivor’s Helpline)

www.lbbc.org

Addresses post-treatment needs of women with breast cancer through educational programs, newsletter, helpline for survivors and family members. Available in Spanish.

Mautner Project: The National Lesbian Health Organization

202.332.5536 or 866.MAUTNER (866.628.8637)

www.mautnerproject.org

Education, information, support and advocacy for lesbians with cancer, their families and caregivers. Offers a national Peer Support Network to lesbians with cancer, their partners and family, also bereavement support.

Men Against Breast Cancer

866.547.MABC (866.547.6222)

www.menagainstbreastcancer.org

Focus is on changing breast cancer from a woman’s issue to a family issue. Provides support services for men who have a partner with breast cancer. Web site has a bulletin board for online discussion.

Mothers Supporting Daughters with Breast Cancer

410.778.1982

www.mothersdaughters.org

Support network of mothers who have daughters with breast cancer to help mothers become better “care partners.”

National Alliance for Caregiving

301.718.8444

www.caregiving.org

Provides support to family caregivers of older persons. Web site has a family care resource section, article and tips for caregivers and more.

National Association of Hospital Hospitality Houses, Inc.

800.542.9730

www.nahhh.org

Helps provide family-centered lodging and support services for people needing treatment away from home and their families. Twelve houses located in North Carolina.

National Cancer Institute’s Cancer Information Service

800.4.CANCER (800.422.6237) or 800.332.8615 (TTY)

www.cancer.gov

This government organization is one of the best resources for cancer patients. Has free information for caregivers.

National Coalition for Cancer Survivorship

301.650.9127 or 877.NCCS.YES (877.622.7937)

www.canceradvocacy.org

Advocacy group led by cancer survivors. Provides free “Cancer Survival Toolbox.” Has information on Caring for the Caregiver. Available in Spanish.

National Family Caregivers Association

301.942.6430 or 800.896.3650

www.thefamilycaregiver.org

Offers education, support and advocacy for caregivers.

North Carolina Comprehensive Cancer Program

919.707.5300

www.nccancer.com

Provides helpful links for family and caregivers as well as links on general cancer information, financial assistance and more.

R.A. Bloch Cancer Foundation

816.854.5050 or 800.433.0464

www.blochcancer.org

Offers information, resources and support for patients and caregivers, including free book and guide (or view online): “Cancer—There’s Hope and Guide for Cancer Supporters.”

Susan G. Komen for the Cure

800.I’M.AWARE (800.462.9273)

www.komen.org

Foundation for breast cancer research, education,screening and treatment. Has a toll-free helpline (above) and free booklets for caregivers.

Vital Options International Telesupport Cancer Network

818.788.5225 or 800.GRP.ROOM (800.477.7666)

www.vitaloptions.org

Weekly call-in cancer radio show called “The Group Room” links callers with other patients, healthcare providers, long-term survivors, and family members of patients with cancer.

Well Spouse Foundation

800.838.0879

www.wellspouse.org

Volunteer nonprofit that gives support to people caring for chronically ill or disabled spouse. Provides educational pamphlets, bimonthly newsletter and online discussion.

Web Sites

Association of Cancer Online Resources (ACOR)

www.acor.org

Hosts public online support groups. Click on “Mailing Lists” to see a listing. Groups include:

• BC-SUPPORTERS (partners of breast cancer patients)

• CAREGIVERS (family/caregivers of cancer patients)

• PAIN-CAREGIVERS (family/caregivers of patients suffering from cancer pain)

• FACING-AHEAD (people facing the death of a loved one)

Bosom Buddies

www.bosombuddies.org

Nonprofit organization providing information and support for breast cancer. Includes video “Partners in Hope, A Man’s Guide to Women’s Breast Cancer” and more.

Full Circle of Care

www.fullcirclecare.org

A web site for family caregivers, geared toward seniors in North Carolina (but applicable to other states). Offers information, resources and opportunity to talk or email with a Caregiver Specialist. Available in Spanish.

Oncolink: Information for Caregivers

www.oncolink.org/coping

Can subscribe to a caregiver or hospice list. The site has personal stories and links to other resources.

Today’s Caregiver

www.caregiver.org

A web site for family and professional caregivers. Offers information, resources and online discussion forums, as well as newsletter and Today’s Caregiver magazine.

Resources

Organizations

American Cancer Society (ACS)

800.ACS.2345 or 866.228.4327 (TTY)

www.cancer.org

Provides information and services for all forms of cancer, including breast cancer, diagnosis, treatment and many other topics. Children and parent information is available through free booklets or online by searching “helping children cope.” Available in Spanish.

Breast Cancer Network of Strength

800.221.2141 (24-hour hotline) 800.986.9505 (hotline in Spanish)

www.networkofstrength.org

Offers educational and support programs and a free 24-hour hotline. Has information on how to talk with children of different ages about cancer. Available in Spanish.

Buddy Kemp Caring House (Charlotte, NC)

704.384.5223

www.presbyterian.org/health_services/cancer_center/ support_services/buddy_kemp_caring_house

All services free. Offers support groups and sponsors a cancer camp for families.

CancerCare

800.813.HOPE (800.813.4673)

www.cancercare.org

Has a Helping Children Cope program through telephone counseling (for older children age 16 and up). Available in Spanish.

Cornucopia House Cancer Support Center (Chapel Hill, NC)

919.401.9333

www.cornucopiahouse.org

Offers education, companionship and support to help people cope with cancer. Services are free and include support groups for children.

Kids Konnected

949.582.5443 or 800.899.2866 (Children’s Hotline)

www.kidskonnected.org

Offers a Children’s Hotline (24 hrs/day), Internet chat rooms and support groups for children to talk with other children who have a loved one with cancer.

KidsCan! (Raleigh, NC)

919.784.6455

www.rexhealth.com/services_and_wellness/index_of_services/cancer_center/kidscan.asp

Provides educational and emotional support for children,ages 6 to 18, whose parent has been diagnosed with cancer.

KIDSCOPE

404.892.1437

www.kidscope.org

Provides free books and videos to help children cope with changes in a family when a parent has cancer. Available in Spanish.

National Cancer Institute’s Cancer Information Service

800.4.CANCER (800.422.6237) or 800.332.8615 (TTY)

www.cancer.gov

This government organization is one of the best resources for cancer patients. Has free booklet for young people whose parents have cancer.

Susan G. Komen for the Cure

800.I’M.AWARE (800.462.9273)

www.komen.org

Foundation for breast cancer research, education, screening and treatment. Has free booklets to help children cope when their mother has breast cancer.

Web Sites

BMT InfoNet

www.bmtnews.org

Offers information and support for blood and marrow transplant patients. Has a book for children titled “Mira’s Month,” written by a breast cancer survivor for her four-year old daughter.

Bosom Buddies

www.bosombuddies.org

Offers information and support to breast cancer survivors. Has video “Will Mom Be Ok? Families Talk About Breast Cancer,” that shares stories of families with children ages 3-18 and input from counseling experts.

The Cancer Club

www.cancerclub.com

Offers information and support for breast cancer survivors. Has book for children, “Our Family Has Cancer, Too!,” with cartoons about two brothers coping with their mother’s cancer diagnosis.

CareShare

forums.delphiforums.com/careshare

An online support group and discussion forum for caregivers.

CARINGKIDS

www.breasthealth.com.au/livingwithcancer/ impactonchildren.html

An Internet support group for children who know someone with cancer. Offers a monitored, open forum where kids may exchange information, share feelings and make friends with other kids dealing with similar issues.

Fernside Online: For Grieving Children

www.fernside.org

Has information on how to help a grieving child following the death of a loved one. Includes a section just for children.

Hurricane Voices

www.hurricanevoices.org

Offers a thorough, family reading list to help children and young adults of different ages cope with cancer in their parents. Also includes books for parents.

KIDSAID from GriefNet

http://kidsaid.com

Kids can contact other kids online to talk, get advice,and share stories about grief. Directed by clinical psychologists and grief counselors.

KIDSCOPE

www.kidscope.org

Offers help for children whose parents have cancer. Also has “Kemo Shark,” a comic book to help children dealing with a parent’s cancer and chemotherapy; and video, “My Mom Has Breast Cancer: A Guide for Families,” that has interviews with breast cancer survivors and their children.

Mothers’ Living Stories Project

www.motherslivingstories.org

Connects ill mothers with trained volunteers in a process that is healing to both. Volunteer Listeners guide mothers in reviewing their lives and recording their stories for their children.

Oncology Nursing Society

www.ons.org

Offers “Once Upon a Hopeful Night,” a book created to help parents break the news to their children and open the lines of communication so that the specific situations can be addressed. See www.ons.org/publications/books/HopefulNight.shtml.

Support Groups in North Carolina

Blessed is the influence of one true, loving human soul on another.
— George Eliot

Throughout our state there are many support groups and organizations which offer support services for breast cancer patients, survivors, family members, friends and caregivers. Whether you choose to attend a support group is your decision. You may take comfort in knowing that people who care are ready to share their time, experiences, empathy and compassion with you.

Unless otherwise noted, support groups are free of charge. Support groups offer women and men with breast cancer, their families, friends and children the opportunity to meet others with similar experiences and share information about the disease and practical ways to cope.

We have gathered information about the following types of support groups across the state. These groups are organized by county.

• breast cancer
• African American
• women’s cancer
• cancer
• lymphedema
• metastatic cancer
• family/caregivers
• children’s groups
• grief recovery
• cancer camps (for people with cancer or for children whose parents have cancer)

Although we have made every effort to find support groups in North Carolina, we cannot guarantee that this list is complete.

Alamance County

Burlington Medical Equipment

1623 Vaughn Road, Burlington, NC 27217
336.228.8912
Hours:  Monday-Friday 8:30 am - 5:00 pm, Monday-Friday evenings & Saturdays by appointment
Products:  Breast prostheses, partial breast forms, trained fitters, bras, camisoles, swimwear, hats, turbans, Maddox Oncology Products, lymphedema sleeves

Clover’s Mastectomy and Medical Supply

1040 South Church Street, Burlington, NC 27215
336.222.8052
Hours:  Monday-Friday 9:00 am - 5:00 pm, Saturday 9:30 am - noon
Products: Breast prostheses, trained fitters, bras, swimwear, hats, turbans, lymphedema sleeves & gloves

Wigs and Hair by Charlie

1068 East Harden Street, Graham, NC 27253
336.229.9002
Hours: By appointment only
Products: Hats, turbans, wigs, wig stylists, wig care products

Williams Medical Equipment

1230 Springwood Avenue, Gibsonville, NC 27249
336.449.7357 or 800.582.4912
www.wmsmedical.com
Hours: Monday-Friday 8:00 am - 5:00 pm, after hours and Saturday fittings by appointment
Products: Breast prostheses, trained fitters, hats, turbans, wigs, lymphedema sleeves

Anson County

Anson-Union Prosthetic Orthotic Center

701 East Roosevelt Boulevard, # 200-B Monroe, NC  28112
704.782-0908 or 704.291.2218
www.oandp.com
Hours:  Monday-Friday 8:00 am - 5:00 pm, call for appointment
Products:  Breast prostheses, trained fitters, bras

Beaufort County

East Carolina Orthotics & Prosthetics

1102 Brown Street, Washington, NC  27889 252.940.1203
Hours:  Monday-Friday 8:30 am - 5:00 pm
Products:  Breast prostheses, bras, trained fitter comes to location; affiliated with Albemarle Orthotics and Prosthetics (See Pasquotank County)

Bladen County

Sunnie’s Wigs and Fashions

109 West Broad Street, Elizabethtown, NC 28337
910.862.6454
Products: Wigs, African-American wigs

Brunswick County

Family Medical Supply

4600-12 Main Street, Shallotte, NC 28470
910.755.7066
Hours: Monday-Friday, 9:00 am - 5:00 pm
Products: Breast prostheses, trained fitters, bras

Buncombe County

Diletante Exclusively Yours

14 Robinson Avenue, Asheville, NC 28803
828.274.0753 or 800.726.2860
diletantedeb@charter.net
www.diletanteexclusivelyyours.com
Hours:  Monday-Saturday 9:00 am - 7:00 pm
Products:  Custom breast prostheses, trained in-home fitters, bras, swimwear, skin care products, lymphedema sleeves & pumps

Mission Hospitals Breast Cancer Program

534 Biltmore Avenue, Asheville, NC 28801
828.213.1839 or 828.213.0268
Hours: Monday-Friday 8:00 am - 4:30 pm
Products: Breast prostheses, trained fitters, bras, hats, turbans, swim prostheses, physical therapist for lymphedema patients (no products)

Mountain Respiratory Service, Inc.

23 Hamilton Street, Asheville, NC 28801
828.253.2805 or 800.868.3513
Hours: Monday-Friday 9:00 am-5:00 pm
Products: Breast prostheses, trained fitters, bras, lymphedema sleeves

Orthopedic Appliance Company, Inc.

75 Victoria Road, Asheville, NC 28801
828.254.6305 or 800.972.5168
www.orthopedicappliancecompany.com
Hours: Monday-Friday 8:00 am - 5:00 pm
Products: Breast prostheses, trained fitters, bras, lymphedema sleeves

Burke County

Piedmont Medical Supply

752 4th Street SW, Hickory, NC 28602
828.327.6970
www.salespncpms.com
Hours:  Monday-Friday 9:00 am - 5:00 pm
Products: Breast prostheses, trained fitters, bras, swimwear, hats, turbans, wig stylists, skin care products, hair/bang pieces, lymphedema sleeves, gloves, compression garments & pumps

Cabarrus County

Faith Prosthetic Orthotic Services, Inc.

1025 Concord Parkway, Concord, NC 28026
704.782.0908
www.oandp.com
Hours: Monday-Friday 8:00 am - 5:00 pm
Products:  Breast prostheses, trained fitters, bras

Home Oxygen and Medical Equipment

Copperfield Plaza 320-B Copperfield Boulevard, Concord, NC 28025
704.782.2188 or 800.343.1021
Hours:  Monday-Friday 8:30 am - 5:00 pm
Products:  Breast prostheses, trained fitters, bras, swim and leisure prostheses

Caldwell County

Hudson Discount Drug

510 Central Street, Hudson, NC 28638
828.726.0901
Hours:  Monday-Friday 9:00 am - 6:00 pm, Saturday 9:00 am - 4:00 pm
Products:  Breast prostheses, trained fitters, bras, swimwear, swim prostheses, lymphedema sleeves

Carteret County

Better Health Store

3011-B Bridges Street, Morehead City, NC  28557
252.240.2710
Hours:  Monday-Friday 10:00 am - 5:00 pm, or by appointment
Products:  Breast prostheses, trained fitter, soft forms, bras, limited line of swimwear in season

Catawba County

American Home Patient