After the Diagnosis?

You gain strength, courage and confidence by every experience in which you must stop and look fear in the face. You must do the thing you think you cannot do.

—Eleanor Roosevelt

If you have been diagnosed with breast cancer, you are likely to be experiencing many different emotions. You may feel that you have to make immediate and instant decisions regarding your treatment. In most cases, you do not. It is important that you are comfortable with the treatment choices you make. Whatever personal approach you use to help you cope, be sure that you are not alone. Developing a support structure right from the start can be vital. Once you have gathered all the information you need, it is ultimately up to you to decide which path you will follow.

Although you have important decisions to make after diagnosis, you DO have time for the following:

• To ask questions, do some research and get a second opinion (if you desire). You do not need to get permission from your doctor to obtain the second opinion.
• To collect your thoughts and become more informed about and comfortable with your treatment options.
• To talk with other women who have been treated for breast cancer and learn how they made their own decisions for treatment and how they feel about it now. (If you are not sure how to find someone, try Women Building Bridges on page 197. Over fifty North Carolina breast cancer survivors have volunteered to talk about their experiences and share their insight.)

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. It is a relatively new procedure. It may not be available in all areas. 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 is a different procedure. It 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.

TREATMENT THERAPIES

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 simulation.

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 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, or mouth soreness. 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.

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 anti-cancer 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 your 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 Procrit or Aranesp. These drugs prevent and treat anemia (low red blood cells) from chemotherapy.

Targeted Therapy
You may have heard about a new, promising treatment called Herceptin. It is a form of treatment that works on the tumor protein HER-2/neu. Herceptin is effective in fighting metastatic 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.

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.

If your treatment choice includes mastectomy, you may want to find out about your options for breast reconstruction. 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 Board-certified 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 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 through a tube in order to stretch the skin 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.

Flap Reconstruction
Another common form of reconstruction involves creating a flap, including 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 a pocket for an implant or, in some cases, creating the breast mound itself without the need for an implant. This type of procedure is sometimes referred to as a TRAM flap, if tissue from the abdomen is used, or a latissimus dorsi flap if tissue is used from the back.

Another flap technique involves using tissue that is surgically removed from the abdomen, thighs or buttocks, and then transplanted to the chest by reconnecting the blood vessels to new ones in that region. This procedure requires the skills of a plastic surgeon who is experienced in microvascular surgery as well. These types of procedures are referred to as free TRAM flap (using tissue from the abdomen, including muscle), free DIEP flap (using tissues from the abdomen, but no muscle), or free SGAP flap (using tissue from the buttocks). Because muscle flap reconstruction involves the blood vessels, women who 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 skin expansion, and recovery will take longer than with an implant. 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.

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. Unless the skin graft option is used, this is not major surgery, and both nipple and areola reconstruction may be performed in your plastic surgeon’s office.

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.

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 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 walkng 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 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 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.

Buddy Kemp Caring House (Charlotte, NC)
704.384.5223
www.novanthealth.org/buddykemp
Provides a home-like environment for emotional support away from the hospital setting in Charlotte, NC. All services are free.

CancerCare
212.221.3300 or 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
cancerservicesonline.org
A local, North Carolina 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 Breast Cancer Coalition
202.296.7477 or 800.622.2838
www.stopbreastcancer.org
A national advocacy organization that offers the excellent, free Guide to Quality Breast Cancer Care. Includes sections on Understanding Your Diagnosis, Getting a Second Opinion, and Getting Comprehensive Care.

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 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.

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.

Y-ME National Breast Cancer Organization
312.986.8338 or 800.221.2141
800.986.9505 (Spanish)
www.y-me.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.

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.

Books and More

A Breast Cancer Journey: Your Personal Guidebook, by the American Cancer Society (2001). Written for the newly diagnosed and includes insights from breast cancer survivors. Call American Cancer Society at 800.ACS.2345 or see www.cancer.org.

A Woman’s Decision: Breast Care, Treatment and Reconstruction, 3rd ed., by Karen Berger and John Bostwick, III, MD (1998). A comprehensive resource on breast cancer surgical options and reconstructive surgery. Includes interviews with survivors.

Be a Survivor: Your Guide to Breast Cancer Treatment, by Vladimir Lange, MD (2002). Combines medical knowledge from experts in the field with words of wisdom from survivors; includes photos and graphics.

The Breast Cancer Handbook–Taking Control After You’ve Found a Lump, by Joan Swirsky and Barbara Balaban (1998). Gives concrete advice and reassurance about getting a diagnosis and second opinion, choosing doctors, making treatment choices, coping with side effects.

The Breast Cancer Survivor Manual: A Step by Step Guide for the Woman with Newly Diagnosed Breast Cancer, 2nd ed., by John Link, MD (2000). Valuable guide for women newly diagnosed. Discusses second opinions, understanding pathology reports, how breast cancer is staged and how that affects prognosis.

Breast Implants: Everything You Need to Know, 2nd ed., by Nancy Bruning (2002). For women considering breast implants, or for those who have them. Includes details of potential health risks, alternatives to implants, advice on when and whether to remove them.

Diagnosis Cancer: Your Guide Through the First Few Months, by Wendy Schlessel Harpham, MD (1997). Written by an internist who is also a cancer survivor. Has explanations of different diagnostic tests, chemotherapy drugs and abbreviations commonly used by doctors.

Essential Exercises for Breast Cancer Survivors: How to Live Stronger and Feel Better, by Amy Halverstadt and Andrea Leonard (2001). Guidelines and illustrations for an exercise program with pointers for identifying and preventing lymphedema.

Everyone’s Guide to Cancer Therapy: How Cancer is Diagnosed, Treated, and Managed Day to Day (4th Edition), by Malin Dollinger, MD, Ed., Ernest H. Rosenbaum, MD, and Greg Cable (2002). Includes information on diagnosis and treatment, developments in molecular therapy and antiangiogenesis, cancer biology and gene therapy, guidelines for prevention and screening, second opinions in cancer treatment and more.

The First Look, by Amelia Davis with foreword by Nancy Snyderman, MD (2000). Photo collection of mastectomy, lumpectomy, and breast reconstruction with personal stories of women of various ages and ethnic backgrounds.

Guide to Body Image and Cancer. This guide gives women tips about clothing types and styles to wear while undergoing treatment and beyond. Available through Women Helping Women in North Carolina (919.846.1203) or call 800.799.690 or see www.shopwellwithyou.org.

Informed Decisions: The Complete Book of Cancer Diagnosis, Treatment and Recovery, by Gerald P. Murphy, Lois B. Morris & Dianne Lange (1997). A comprehensive and supportive volume with information on cancer risks, screening, diagnosis and treatment.

Making Informed Medical Decisions: Where to Look and How to Use What You Find, by Nancy Oster, Lucy Thomas and David Joseph, MD (2000). Introduces the world of medical information (in print, on the Internet, and through contact with medical experts and patients) and acts as a friendly referral librarian.

Managing the Side Effects of Chemotherapy and Radiation Therapy, by Marylin J. Dodd, RN, PhD (2001). Easy-to-read book describing the possible side effects and symptoms of chemotherapy agents and radiation therapy, offering suggestions for each side effect.

“One Move At a Time: Exercises for Women Recovering from Breast Cancer,” (video, 1996). Simple, gentle exercise video to restore range of motion and aid in recovering feeling in the arm. Call The Cancer Club, 800.586.9062 or see www.cancerclub.com.

Reconstructing Aphrodite, by Terry Lorant with foreword by Susan Love, MD (2001). Photographic story of breast cancer survivors of various ages and backgrounds who chose to have reconstruction. See www.verveeditions.com.

Recovering From Breast Surgery: Exercises to Strengthen Your Body and Relieve Pain, by Diana Stumm, PT (1995). Stumm, a physical therapist for breast cancer patients, describes how to speed up the recovery process.

Show Me: A Photo Collection of Breast Cancer Survivors’ Lumpectomies, Mastectomies, Breast Reconstructions and Thoughts on Body Image, by the Breast Cancer Support Group at Penn State Geisinger Women’s Health Center (2001). Photos and reflections by breast cancer survivors on their surgeries and reconstruction. Contact the Women’s Health Center, 717.531.5867 or see www.susanlovemd.com/showme_frames.html.

“Woman to Woman–Breast Cancer and Reconstruction Options”, by Bosom Buddies, Inc. (video). Has information about reconstruction, combined with real life experiences and before-and-after photos of breast cancer survivors. Call 877.245.1300 or see www.bosombuddies.org.

“WomenStories” (videos). A series of videos with breast cancer survivors explaining stages of breast cancer care and treatment. Includes diagnosis, surgical choices, treatment, family support, intimacy, recurrence and metastasis, young women, and life after breast cancer. Contact 800.775.5790 or www.womenstories.org.

Web Sites

American Society of Clinical Oncology
www.asco.org
A resource for oncologists as well as patients living with cancer. Sponsors the “People Living With Cancer” web site (www.peoplelivingwithcancer.org).

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

BRCA: Breast Cancer Discussion List
Breast-ONC: Current Advances in Breast Cancer Treatment Discussion List
www.acor.org
These public online support groups provide information and community to their members.

Breast Cancer: Help Me Understand It!
www.surgery.wisc.edu/breast_info/laybreastca.html
Written by a physician who had breast cancer, to clarify information about breast cancer and to help women make choices about treatment.

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 and treatment.

Cosmetic/Reconstructive Breast Surgery
imaginis.com/breasthealth/reconstruction.asp
Site has comprehensive information on breast reconstruction, including images.

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

IBC Research Foundation
www.ibcresearch.org
IBC Research Foundation specifically targets inflammatory breast cancer and the research to find a cure.

IBC 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. (2006 Komen NC Triangle Affiliate Grantee)

Understanding Breast Reconstruction
www.cancerbacup.org.uk/info/breast-reconstruction.htm
Site has a comprehensive guide to breast reconstruction