Edited on February 20, 2011
Knowledge is power. The pen is mightier than the sword. Forewarned is forearmed. It is better to light one candle than curse the darkness. Feel free to add your own favorite truism.
This page will forever be a work in progress. But my short-term goal is that this page will include nearly all the links I have included in previous posts that provide information, resources & support for people dealing with breast cancer & other cancers & health care issues. This will by no means ever be a comprehensive list, and I’m going to try to patch up the current glaring holes in it as I go along. But I can say that I have personally visited each of these links & found some interesting & useful information at each of them. Please remember, however, that if you need medical advice, you need to find & speak with a physician. But when you speak with any physician, remember that physicians are supposed to abide by the principle of informed consent; that you are the person who gets to decide, not them; and that you are entitled to whatever advice or information you need to make an informed decision, including second opinions. So, my first link is to my previous post about this thorny subject: Blind-Sided: Cancer 101 & Informed Consent.
If you have any good links to add here, or if you find a dead or changed link address, please send an email to: firstname.lastname@example.org
Breast Cancer Screening, Evaluation & Prevention:
- Cancer.net’s Guide to Breast Cancer — When you get the bad news, this is a downloadable guide that will help get you up to speed on what to do — and not do. You can print it out, read it with a loved one, bring part or all of it to the doctor’s office, set it on fire, whatever. It’s a place to start.
- Screening for Breast Cancer: U.S. Preventive Services Task Force Recommendation Statement, October, 2009 – the infamous new mammogram guidelines that prompted a big ol’ kerfuffle.
- Breast Cancer Screening With Imaging: Recommendations From the Society of Breast Imaging and the ACR on the Use of Mammography, Breast MRI, Breast Ultrasound, and Other Technologies for the Detection of Clinically Occult Breast Cancer – the radiologists weigh in. This is a downloadable PDF.
- Breast Diagnosis — Written by pathologist Ervin Shaw, M.D., this is a cogent, concise summary of the interpretive tools used to evaluate tissue, fluids and cells to determine the presence, type, stage, prognosis and recurrence risk of breast cancer. The results of these analyses are what your doctors will likely be drawing from when they recommend treatment options.
- The Van Nuys Prognostic Index — an analytical tool, also presented by Dr. Shaw, used by pathologists and oncologists to calculate recurrence risk for patients with ductal carcinoma.
- Tumor Markers for Breast Cancer — “To help doctors give their patients the best possible care, the American Society of Clinical Oncology (ASCO) asks its medical experts to develop recommendations for specific areas of cancer care. ASCO developed a clinical practice guideline about tumor markers for breast cancer. This guide for patients is based on ASCOâ€™s recommendations.” A downloadable pamphlet.
- Alternative Cancer Treatment & Immunity Management – A PDF.
Breast Cancer Support, Info, & Resources:
- BreastCancer.org – a site providing expert, succinct, accurate & up-to-date information provided by a physician advisory board, plus — and perhaps more importantly — a phenomenal online forum of peers comprised of survivors & their family & friends who help each other in all kinds of way.
- Breast Cancer Wiki — This is an editable wiki list of cancer resources put together by a survivor. Feel free to contribute to it.
- No Surrender Breast Cancer Foundation – A great site offering Breast Cancer 101, a peer forum, and other good stuff, founded by a two-time breast cancer survivor.
- The Breast Cancer Site – If you click on this link, then on the pink button you’ll find there, TBCS’s sponsors will contribute money to provide free mammograms for women who can’t afford them.
- Tee Shirts with Attitude
- National Cancer Institute – These are the big guys. Their extensive website provides a cancer dictionary, info & resources about every kind of cancer there is, even information about research trials that patients can participate in.
- Reach to Recovery – Survivors who can help you become a survivor with home visits, assistance and information. If you register on their website, you can also get access to more help and info about local support and education groups. From their mission statement: “For more than 40 years, the American Cancer Society Reach to Recovery program has helped people (female and male) cope with their breast cancer experience. This experience begins when someone is faced with the possibility of a breast cancer diagnosis and continues throughout the entire period that breast cancer remains a personal concern.”
- Also check the links under Radiation & Chemotherapy below.
Breast Cancer Research & Awareness:
- Army of Women — Dr. Susan Love’s organizing project to get women to sign up in order to be available as potential participants in research to understand & cure breast cancer. Info, blog, research updates, etc.
- The Breast Cancer Research Foundation
- National Breast Cancer Coalition
BRCA Genes & Hereditary Cancers
- F.O.R.C.E. – Facing Our Risk of Cancer Empowered. Certain genes, called BRCA1 and BRCA2, have been found to show mutations which are associated with the risk of developing breast and ovarian cancer. You can be tested to determine if you have these mutations and get help to decide what to do about it. FORCE’s mission: “To provide women with resources to determine whether they are at high risk for breast and ovarian cancer due to genetic predisposition, family history, or other factors; to provide information about options for managing and living with these risk factors; to provide support for women as they pursue these options.”
- BRCA Testing and Cancer Risk – a PDF Fact Sheet from the National Cancer Institute.
Cancer Related Fatigue
- National Cancer Institute PDQ on Cancer Related Fatigue
- The “F” Word – a blog post by me about cancer related fatigue. How do you know you have it? How do you get help?
- Losing It & Trying to Get It Back — another post by me with further information.
Caregiver Support & Info
- National Family Caregivers Association – The NFCA mission is to empower family caregivers to act on behalf of themselves and their loved ones, and to remove barriers to health and well being.
- Lotsa Helping Hands – “a private, web-based caregiving coordination service that allows family, friends, neighbors and colleagues to create a community and assist with the daily tasks that become a challenge when caring for an aging loved one or during long-term caregiving.”
Chemotherapy & Radiation
- Cancer.net – Radiation Side Effects
- Radiation Pneumonitis
- Understanding Chemotherapy — from Cancer.net, put into a hyper-linked PDF that will help you get to other related topics for more info.
- Cancer.net – Chemotherapy Side Effects
- Late-Appearing Side Effects of Chemo or Radiation
- BP4CG – Beauty Pearls For Chemo Girls; kind of a goofy name for the site centered around a useful book that helps you deal with a lot of the physical side effects of chemo that affect your hair, skin, fingernails, etc. You can get the book for $10 with all the info in one place. Plus they have workshops all over.
- Look Good…Feel Better – Another organization that helps you handle the physical changes to your appearance during cancer treatment, with workshops all over the place which give out free make-up and advice. Their mission: “ Look Goodâ€¦Feel Better is a free, non-medical, brand-neutral, national public service program created to help individuals with cancer look good, improve their self-esteem, and manage their treatment and recovery with greater confidence.”
International Breast Cancer Help
- La Maison du Cancer –a comprehensive cancer information site based in France. “Il est né d’un constat : les personnes touchées par un cancer ont du mal à trouver des réponses concrètes aux questions qu’elles se posent sur la façon de vivre le cancer au quotidien. Les malades, leurs proches et plus largement toute personne interpellée par ce fléau trouveront sur www.lamaisonducancer.com une information large, rigoureuse et indépendante sur toutes les questions soulevées par cette pathologie, des plus pratiques : aides juridiques et sociales, conseils pour mieux supporter les traitements …, aux plus sensibles : problèmes de fertilité, discrimination etc. Une large place est accordée à la prévention, en amont de la maladie….Il ne s’agit pas d’un site médical mais d’un site « sociétal », qui a pour ambition de lever le tabou sur ce sujet, et d’engager une réflexion collective sur un meilleur « traitement » de cette population. En effet, cette dernière subit une “double peine” : la maladie et sa cohorte de problèmes professionnels, administratifs, financiers, affectifs, etc.”
- Arbeitskreis Frauengesundheit in Medizin, Psychotherapie und Gesellschaft e.V. — Germany’s Working Group on Women’s Health.
- Breast Cancer Action Germany
- Breast Cancer Care — an organization that provides comprehensive help and information for women in the United Kingdom.
Lymphedema & Soft Tissue Cording
- Lymph Notes
- National Cancer Institute PDQ on Lymphedema
- Lymph Net – peer support
- What Health Care Providers Need to Know About Lymphedema
- Cording & Axillary Web Syndrome – lymph node excision is not the only thing that can put you at risk for developing circulatory congestion in your lymphatic system. Radiation and/or surgery alone can put you at risk.
- Living With Lymphoedema After Breast Cancer — a great, practical guide to preventing, treating and dealing with lymphedema. Downloadable.
Money, Work & Health Insurance
- U.S. Department of Labor — information about your right to take time off from work under the Family Medical Leave Act.
- Healthcare.gov — a site about your health insurance options, put together by the U.S. Department of Health & Human Services.
- Cancer and Careers — an organization that helps working women with cancer, which is most of us. From their mission statement: “Cancer and Careers is committed to changing the face of cancer in the workplace by providing a comprehensive website, free publications, and a series of support groups and educational seminars for employees with cancer.”
- Breast Cancer Care’s Financial Support Pulications — Help for women in the UK.
- Cancer Insurance from Colonial Life – This is a supplemental insurance you can buy on your own or through your employer that helps cover the costs of treatment that health insurance doesn’t. It also reimburses you $100 each year if you get a preventative cancer test like a Pap smear, PSA test, mammogram or colonoscopy.
- Financial help resource link from No Surrender Breast Cancer Foundation
- Co-Pay.org, which helps with medication & other co-pays & costs for cancer treatment.
Surgery & Reconstruction
- My Hope Chest — an organization that provides funding to women who cannot otherwise afford breast reconstruction.
- New Attitude Custom Prostheses — yes, off the shelf prosthesis have improved, but custom breast prostheses are phenomenal. Be sure to check out the photos of how they fit. Amazing. And covered by insurance in most cases.
- Handful Brassieres — bras for women that actually sweat sometimes and aren’t all the same size. Can accommodate prostheses.
- The Breast Life — an irreverent, humorous and enormously informative site with all manner of info,expertise and resources for living with and without our breasts.
Survivorship: Hormone Therapy, Depression, Osteoporosis & Recurrence
- Bright-Sided: How the Relentless Promotion of Positive Thinking Has Undermined America — by Barbara Ehrenreich, who survived breast cancer herself. The first chapter is a must-read for anyone who’s been beat up by one of those misguided, presumptuous folks trying to foist the Pink Koolaid on you.
- Cancer Happens — a post about clinging to reality in the face of idiots playing “the blame game.”
- Not All Better — A Survivorship Toolbox — a blog post with several linkable resources to improve the way that the public health community addresses cancer survivorship and to empower survivors with the skills to advocate for ourselves and obtain access to effective, comprehensive help.
- Nowhere Hair: Explaining Cancer to Young Children — a book and a website by Sue Glader, a survivor and founder of the Beautifully Bald Initiative.
- This Is Not the Life I Ordered – A great book written by a group of four women who helped each other navigate the shoals of life.
- osteoporosis — Before you swallow any hormone therapy or let anyone yank out your ovaries, read this PDF pamphlet, written by me in my professional capacity as a physical therapist & osteoporosis educator.
- Breast Cancer Recurrence Risk Analysis — A useful summary of the known statistics about recurrence. It’s a glass-half-full/glass-half-empty subject.
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