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Breast Cancer ResourcesWhen I was diagnosed with breast cancer in 2006 at the age of 48, the doctor handed me a few pamphlets and asked me when I wanted to schedule the surgery. I felt shell-shocked. I actually scheduled the surgery before going home and realizing that I needed a whole lot more information—and a second opinion—before doing anything. I spent several months reading books and researching my options—and getting two second opinions—before taking action. I wish I’d had a guide to tell me the right steps to take after hearing that diagnosis, and to point me to the most useful and responsible websites. This page is an attempt to create that guide. It is a personal list of the resources that I found most useful on my journey, and is by no means a comprehensive list of everything out there. Contributions are welcomed—please email me with useful information, book recommendations and links. I am especially interested in good links and resources for lymphedema, which I don’t have yet. Let me know what you want to see here. This is only the beginning.
WHAT TO DO IF YOU’RE DIAGNOSED WITH BREAST CANCER 7 Steps to Take if You’re Diagnosed with Breast Cancer1. Slow Down. Get as much information as possible from your doctor.
Ask your doctor how much time you have to make a decision. According to Dr. Susan Love “Whatever treatment you decide on, you’ll have to live with it for the rest of your life—and giving yourself a week or two to think it over won’t shorten that life.” 2. Get a second opinion—even a third, from another hospital or treatment center. Doctors and pathologists may interpret your results differently or prefer alternate treatment methods. Be sure to bring your test results, mammography films, and pathology slides if requested. Have a friend come with you to take notes (and give emotional support), so you can concentrate on what the doctor is saying. 3. If your doctor has recommended a biopsy, tell her about all medications, vitamins or herbs you are taking. Some, especially anti-inflammatories and anti-oxidants, can cause increased bleeding. Make an appointment with the hospital nutritionist to find out what is safe to continue taking before biopsy or surgery. 4. Get a small notebook or make a binder. Use it to keep your appointments, take notes, and keep a card from every doctor you see. At home, keep a file with copies of all your reports, bills, and information from your doctor. 5. Talk to two different plastic surgeons about your reconstruction options—before your breast surgery. There are many different reconstruction options, and length of surgery and recovery times vary considerably. Be sure you know what all your choices are so you can decide what’s right for you. The Reconstruction Guidebook, by Kathy Steligo is an excellent resource. 6. Reach out to a support group like SHARE or Gilda’s Club, your hospital’s social worker, or a friend with breast cancer. It’s helpful to share your questions and feelings with women who have already experienced what you are going through now. 7. Educate yourself. A good breast cancer book will help you understand your cancer and make informed decisions about your treatment. Several good ones are: [ back to top ] General Breast Cancer Information Complementary and Alternative Medicine for Breast Cancer Breast Reconstruction Information Preparing for Mastectomy Recovery After Mastectomy [ back to top ] FINDING THE RIGHT DOCTOR FOR YOUR BREAST CANCER CARE If you live in a large urban area, you probably have many hospitals and breast cancer centers to choose from. Research their websites and find one that suits your needs (I looked for one that was CAM [Complementary and Alternative Medicine] friendly). When you meet with the doctor, be sure there’s good rapport between you, as she will be taking charge of a very important part of your life! If you can’t get to a large medical center, many offer a “second opinion service.” Do a web search for “second opinion service” to find one that will work with your insurance. How To Find A Good Doctor [ back to top ]
Silicone vs. Saline Breast Implants Getting insurance to pay for cohesive gel implants may be difficult as they are still “in trials” in the U.S., although the implants have been used successfully worldwide since the early 1990s. Canada resoundingly approved them in 2006. In New York, these doctors are participating in the trial: Dr. Peter Cordiero at Memorial Sloan Kettering Cancer Center. (You must have your mastectomy at Sloan Kettering as well.) Dr. Norman Schulman at Lenox Hill Hospital. [ back to top ] BREAST RECONSTRUCTION AND BREAST IMPLANT INFORMATION Facing Our Risk Just Breast Implants Center for Microsurgical Breast Reconstruction Johns Hopkins University "Ask An Expert" page Implant Info Center for Women and Families Statement from FDA hearings on safety of silicone breast implants Don’t try to be superwoman after your mastectomy. Plan to have family and friends take care of you for at least a week. Your range of arm motion will be limited and you’ll probably feel weak for a while. Sleeping is difficult as there are no comfortable positions! Be prepared with comfortable pants and button- or zip-up shirts as you won’t be able to pull anything over your head for a while. Physical therapy can help you with stretches and exercises to regain full arm movement. Ask your doctor for a referral to a physical therapist; don’t assume the same exercises you did before surgery will help—they may even be harmful. Push-ups are NOT a good idea at this time! If you have no access to physical therapy, Recovering From Breast Surgery: Exercises to Strengthen Your Body and Relieve Pain, by Diana Stumm is a good guide. After surgery, you will probably be left with one or more “drains,” tubes that allow fluids from the surgery site to drain outside the body. They can be painful if allowed to pull on the incision site. One of the nicest things you can do for yourself is to purchase a “mastectomy camisole,” with pockets for the drains, before surgery since you’ll be living in it for several weeks afterward. SofteeUSA makes one that is incredibly comfortable and their customer service is wonderful. Don’t balk at the price; it’s well worth it. The site says your insurance may pay for it, but mine didn’t. Your doctor will provide you with a surgical bra after your surgery. However, you will probably want more than one! You will need supportive, front-opening bras for support. Make Me Heal has a vast selection of post-surgery bras and reconstruction-related products but they’re quite expensive. Zip front cotton sports bras are very comfortable and much less expensive. The least expensive zip-front bra is from Hanes.com. BareNecessities.com carries models from Nike, Jockey and Moving Comfort. [ back to top ] BREAST CANCER COMMUNITY AND BREAST CANCER FORUMS SHARE Support groups and educational programs in New York City and a nationwide hotline staffed by survivors. An excellent first call to make. From the website: “We are breast cancer and ovarian cancer survivors and we are here to help you. SHARE has nationwide hotlines staffed by trained and knowledgeable volunteers who are cancer survivors. We also run support groups and educational programs for women with breast or ovarian cancer in the five boroughs of New York City. In other areas, our hotline volunteers can cnd a support group and resources where you live.” Gilda’s Club From the website: “To provide meeting places where men, women and children living with cancer, along with their families and friends, can join with others to build a personal network of social and emotional support as an integral part of cancer treatment. Free of charge and non-profit, Gilda's Clubs offer support and networking groups, seminars, workshops, specialized children's programs and social events, in a nonresidential and home-like setting.” BreastCancer.org Community Knowledge Exchange CarePages From the website: “CarePages are free, easy-to-use Web pages, brought to you by Revolution Health, that help family and friends communicate when a loved one is receiving care. CarePages help Families:
Positive Health Magazine’s Breast Cancer Page [ back to top ] GENERAL BREAST CANCER INFORMATION Center for Disease Control (CDC) Breast Cancer Page BreastCancer.org Dr. Susan Love Research Foundation Breast Cancer Action National Breast Cancer Coalition Medline Plus Center for Medical Consumers [ back to top ] COMPLEMENTARY AND ALTERNATIVE MEDICINE (CAM) FOR BREAST CANCER Complementary and alternative medicine (CAM) for breast cancer—including herbs, acupuncture, vitamins and diet—is becoming more accepted by mainstream medicine as therapies and co-therapies for breast cancer. Many hospitals are embracing complementary medicine. I strongly advise against self-medication, especially when it comes to breast cancer. complementary and alternative therapies are strong medicine and should be used under the care of an experienced practitioner. Be sure to let both of your medical teams (conventional and alternative) know what supplements and medicines you are taking to avoid potential interactions. Finding responsible information on alternative cancer therapies is difficult. The books listed above are good sources. Good information is available online, too, but you need to dig for it—lots of what’s out there is unscientific or just plain untrue. (Conversely, websites that trash alternative medicine indiscriminately, such as “Quackwatch” are poor resources too.) If you’re researching alternative therapies online, follow these guidelines:
National Center for Complementary and Alternative Medicine National Cancer Institute’s Complementary and Alternative Medicine Page University of Maryland Medical Center Breast Cancer Page Complementary and Alternative Medicine Index Whole Health MD Mayo Clinic Drug & Supplement Information Page The Moss Reports The Townsend Letter [ back to top ] COMPLEMENTARY AND ALTERNATIVE MEDICINE (CAM) FOR BREAST CANCER: HOSPITAL WEBSITES New York-Presbyterian (Columbia and Cornell Universities) Scroll down the right side for links. Beth Israel’s Center for Health and Healing NYU Medical Center Consumer Health Library Memorial Sloan Kettering Cancer Center [ back to top ] TRADITIONAL CHINESE MEDICINE (TCM) AND ACUPUNCTURE FOR BREAST CANCER Breast Cancer Treatment with Traditional Chinese Medicine Traditional Chinese Medicine Information Page [ back to top ] University of Maryland Medical Center HealthyWomen.org Naturodoc.com [ back to top ] University of Maryland Medical Center The American Institute of Homeopathy [ back to top ] HOW TO FIND A NATUROPATHIC OR HOMEOPATHIC DOCTOR FOR BREAST CANCER: PROFESSIONAL ORGANIZATIONS American Association of Naturopathic Physicians Oncology Association of Naturopathic Physicians North American Society of Homeopaths National Center for Homeopathy [ back to top ] While eating better won't cure cancer, you can’t go wrong with a healthy diet. At this point it’s been scientifically confirmed that eating vegetables is good for you; processed food should be avoided, and organic food is higher in nutrients. But don’t assume that everything else you hear is true. For instance, soy is heavily promoted as being a good breast cancer-preventive food. In fact, soy may actually increase some women’s risk of breast cancer. Read up and talk to your doctor before adding soy supplements or more soy foods to your diet. Community Breast Health Project BreastCancer.org Nutrition and Breast Cancer Page Fats and Breast Cancer World’s Healthiest Foods Weston A. Price Foundation [ back to top ] |
PLEASE NOTE
The statements on this page have not been evaluated by the FDA (U.S. Food & Drug Administration). They are not intended to diagnose, cure or prevent any disease. The information provided by this website is not a substitute for a consultation with your physician, and should not be construed as individual medical advice.
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