Information about breast cancer

As soon as you receive your diagnosis, you will need to start educating yourself about the type of breast cancer you have. Specifically, you will need to know what conventional cancer care offers in terms of all your treatment options, the survival rates for each option, and all the side effects.  This information will empower you to interact responsibly with your doctors, ask the right questions, and make sure you are getting good answers.  This type of information is easy to find on all the major cancer websites.  You can read articles online, download free publications, and get an up to date understanding of what to expect.   Following are two of the biggest resources.

The National Cancer Institute (NCI) is part of the National Institute of Health, and it can be accessed at http://www.cancer.gov

The American Cancer Society (ACS) is a nonprofit organization, and it can be accessed at http://www.cancer.org.

Check out your Hospitals and Doctors –  Learn what to look for

Patient support

Even if you have a loving family, close friends, and a caring medical team (but especially if you don’t), you will need all the support you can get.  There are lots of organizations available, but I will describe those that helped me the most.

The Cancer Support Community (CSC) is a nonprofit organization dedicated to serving people impacted by cancer.  You can attend support groups, educational sessions, and health and wellness programs, as well as find support, hope and community. CSC programs are free of charge to anyone affected by cancer, including patients, caregivers, loved ones and children.  I attended a weekly group for early stage breast cancer and it was enormously valuable to me.  People in the group told me which doctors to see, which treatments to investigate, what to expect at every step; and they gave me a lot of love.

The CSC Affiliate Network consists of 44 licensed affiliates, 170 locations and a growing number of healthcare partnerships.  You can look for an affiliate near you on the website: http://www.cancersupportcommunity.org

Breastcancer.org (http://www.breastcancer.org/) is a nonprofit organization.  In addition to providing reliable, complete, and up-to-date information about breast cancer, it has Community and Discussion Boards, with people participating 24 hours a day, 7 days a week.  Because people post from all over the world, I found out many things that I did not find out from my doctors, from the big cancer institutions, or from the CSC.  For example, I found out how to keep my hair even though the chemicals I was given had near-100% probability of causing baldness.  I also found out that more than 6% of people given those same chemicals would remain permanently bald, even though their doctors had all promised that their hair would grow back.  I also found a research program that was using a fasting technique to mitigate the very serious side effects of chemotherapy.  Patients can share a great deal of information that you will never find out from the mainstream cancer establishment.

Advocacy

I have a problem with some of the well-known mainstream breast cancer charities that focus on pink ribbons, running marathons, and fundraising for the cure.  Their message seems to be that women with breast cancer should smile bravely, wear pink ribbons, donate money, and blame themselves for getting breast cancer or for failing to recover.

I am only willing to support breast cancer advocacy organizations that turn their focus to prevention, demanding safeguards and accountability from governments and corporations that permit known carcinogens to poison our food, water, and environment, and that support equal access to quality, affordable treatment for everyone affected by breast cancer.

One such organization is Breast Cancer Action (www.bcaction.org), which views the breast cancer epidemic as a social justice issue. Their mission is to achieve health justice for all women at risk of and living with breast cancer.  Following are their core values:

• Health justice as a human right
• Honesty, fearlessness and truth-telling about the breast cancer epidemic
• Honoring women’s diverse voices and lived experiences
• People’s health and well-being over corporate profits
• Transparency and accountability for ourselves and others
• Integrity and freedom from conflict of interest
• Collective action that changes the world for the better

Another advocacy organization is Breast Cancer Prevention Partners (formerly Breast Cancer Fund) (www.bcpp.org). Their mission is to  prevent breast cancer by eliminating exposure to toxic chemicals and radiation linked to the disease.  They envision a world in which:

• We live without fear of losing our breasts or our lives as a result of what we’ve eaten, touched or breathed because the environmental causes of breast cancer have been identified and eliminated.
• Most breast cancer can be prevented, while safe detection and treatment of the disease are the standard and available to all.
• We have succeeded in informing and mobilizing a public that is unrelenting and holds government and business accountable for contaminating our bodies and our environment.
• Public policy protects our health and is guided by the principle that credible evidence of harm rather than proof of harm is sufficient to mandate policy changes in the public’s best interest.
• We have done justice to the women whose struggle and dedication inspired our resolve.

Related Websites and Books

The Environmental Working Group, or EWG (www.ewg.org):.  EWG’s mission is to empower people to live healthier lives in a healthier environment. EWG’s groundbreaking research has changed the debate over environmental health. From households to Capitol Hill, EWG’s team of scientists, policy experts, lawyers, communication experts and programmers has worked tirelessly to make sure someone is standing up for public health when government and industry won’t.

EWG is a great resource for all cancer patients.  It provides hazard guides to food, personal care products, cleaning products, and much more.  It provides safety verification labels for personal care products, guides to water filters, and information about many other products.  It is really an invaluable resource for consumer education.

The Rapunzel Project (http://rapunzelproject.org):  Started by two breast cancer survivors, the website tells you everything you need to know about how to save your hair during chemotherapy.  It explains the types of cold caps available, how they work, where you can find them, how much they cost, and how to get financial aid if you need it.  You will also find tips for users and research on cold caps. 

After Cancer Care: The Definitive Self-Care Guide to Getting and Staying Well for Patients after Cancer by Gerald Lemole, MD (Author), Pallav Mehta, MD (Author), Dwight McKee, MD (Author), and Mehmet Oz, MD (Foreword).  Dr. Lemole is a cardiac surgeon, Dr. Mehta and Dr. McKee are medical oncologists, and everyone knows who Dr. Oz is.  The three authors are also board certified in integrative medicine, so the book is written from the perspective of integrative oncology.  The book provides an action plan to help prevent relapse, and it is pretty much the plan that I follow.

Life Over Cancer: The Block Center Program for Integrative Cancer Treatment by Keith Block M.D. (Author), Andrew Weil M.D. (Foreword).  Dr. Block is one of the foremost integrative oncologists.  This book presents the program developed at The Block Center for Integrative Cancer Treatment in Skokie, Il.(http://www.blockmd.com). The unique Block program for fighting cancer is appropriate for people at different places along the cancer continuum: for those who’ve been recently diagnosed, those in treatment, and those who’ve concluded treatment and need to remain vigilant to prevent recurrence. Dr. Block’s meticulously researched program is thoughtfully laid-out and explained in easy-to-understand language that patients can implement both by themselves, as well as with the assistance of their healthcare providers.

Are You Dense, Inc. (www.areyoudense.org) is dedicated to informing the public about issues concerning breast density.  If you have dense breasts, or if you don’t know your breast density, this website is a good place to start.  Some facts:

• 40% of women have dense breast tissue
• Breast density is one of the strongest predictors of the failure of mammography to detect cancer.
• Mammography misses every other cancer in dense breasts
• Breast density is a well-established predictor of breast cancer risk
• Breast density is a greater risk factor than having two first degree relatives with breast cancer

Are You Dense Advocacy, Inc. (areyoudenseadvocacy.org) is the government relations affiliate of Are You Dense, Inc. Its mission is to make sure women are informed of their breast density status and of the risk that breast density represents. It has been instrumental in getting breast density notification legislation passed in 27 states, and more states are in the process.   Federal legislation has also been introduced to provide access to reliable screening technology for women with dense breasts, and to standardize the communication about dense breast tissue.

Radical Remission: Surviving Cancer Against All Odds by Kelly Turner, Ph.D., is a NYT bestseller, soon to be turned into a movie and docuseries.  Dr. Turner studied cases of unexplained remissions in different types of cancer, and identified nine factors that the cases had in common:

• Radically changing your diet
• Taking control of your health
• Following your intuition
• Using herbs and supplements
• Releasing suppressed emotions
• Increasing positive emotions
• Embracing social support
• Deepening your spiritual connection, and
• Having strong reasons to live

The website (http://www.radicalremission.com) provides the opportunity for people who have had radical remissions to share their stories, so there is now a large database that can be studied.