Resources and Links
General Breast Cancer Education
- Breastcancer.org has General info on breast cancer that is directed to the layperson
- More information on BC from the National Cancer Institute
- The Johns Hopkins Medicine Site with general information but also more detail than some of the other sites on staging
- What do lumps and bumps in the breast mean? Signs and symptoms of breast cancer and when to call a doctor.
- What is Complementary Medicine? From Breastcancer.org
- Clinical Practice Guidelines on the Use of Integrative Therapies as Supportive Care in Patients Treated for Breast Cancer
- The Cancer Treatment Centers of America Link to CTCA TNBC section
- Alternative Cancer Treatment: Cancer Compass~An Alternate Route is a website loaded with information on CAM clinics, therapies, food Cancer Compass
- Cancer Research Institute on Immunotherapy How is Immunotherapy changing the outlook for patients with breast cancer?
- CURE Magazine, in print and online, specializes in cancer– breaking news and stories of interest. Subscriptions are free to patients, survivors and caregivers http://www.curetoday.com/
Support Groups
- Studies like the one discussed in the exercise section show that psychological support can help overcome treatment-induced fatigue and improve treatment outcomes. Support can come from family, neighbors, physician or hospital organized groups or web-based groups. Inspire is a web based support group with over one million members sharing experiences and treatment information for a variety of conditions including breast cancer.
- Nancy’s List is a tremendous effort from a stage IV ovarian cancer survivor and a truly effective activist, Nancy Novack. Here you will find a national directory of support professionals, tips for obtaining financial help as you navigate cancer, stories of hope, information on integrative therapies and more: https://nancyslist.org/nancys-list/
- Breast Cancer Sisterhood is a support group started by breast cancer survivor Brenda Coffee. It is a family oriented site, and her blog has been awarded Top BC Blog by blogs.com http://www.breastcancersisterhood.com/
- org links to a number of informational sites and enables cancer patients to set up a personal website to network with family and friends more easily during treatment MyLifeline.org
About Dr. Susan Love, a breast cancer physician:
When I was in college my mother had an abnormal mammogram and underwent ‘lumpectomy” at a hospital in Boston. Her surgeon was Dr. Susan Love, and it has been interesting to follow her career. She published her first book in the late 90’s Dr. Susan Love’s Breast Book”, which the New York Times called “the bible for women with breast cancer”. She is one of the doctors I would want to consult with if I had breast cancer, not just because of her medical expertise, but because of her compassion. I would never wish poor health on anyone, but often it seems that physicians would benefit from having to undergo the same treatment they are prescribing to their patients. Only then would they really understand what it is to BE a patient and have to COPE with illness. Well, in 2012 Dr. Love was diagnosed with leukemia. She returned to work a year later, after chemotherapy and a stem cell transplant. Here is a link to the website for her research foundation: https://www.drsusanloveresearch.org/
In May 2015, Dr. Love was interviewed for a health blog for an organization called Lifescript. In the interview, Dr. Love candidly debunks many common myths surrounding breast cancer diagnosis and treatment and offers sound advice: Link to the interview
Here are some highlights from the interview:
- On changing the way we approach and interpret cancer:
“…cancer is not Osama bin Laden [a foreign invader]. It’s Timothy McVeigh. It’s our own terrorist we grew ourselves.These cells don’t live in isolation. They live in the breast along with fibrous tissue, fat cells, and blood vessels. All these cells are interacting. You can have mutated cells of cancer in your body and not have anything happen. Research and autopsies of women 40 to 50 years old show that 39% of them have cancer cells in their breast doing nothing.
So you need two elements to end [up with] cancer: Not just the cells, but also the “local environment.”
Dr. Love on chemotherapy:
- What’s the quality of life for breast cancer survivors at this point?
If anything, it’s getting worse because we’re over-treating them.
If there’s a 1% improvement in survival by adding yet another drug, we add yet another drug. And they all have side effects. Adriamycin causes heart damage. Some chemotherapy causes leukemia. Tamoxifen causes uterine cancer. Oncologists tend to dismiss the long-term consequences. Drug companies don’t look at them either. We never study: Is the new drug better alone than combined with the old drug? We just add another drug.
- So doctors add drugs because they don’t have data that tells them how they act alone?
And in part, it’s because they get paid more. The more drugs they give, the more doctors get paid. I don’t think that individuals are malicious. I think the fee-for-service system we have leads to that.
- How does that payment work?
As mentioned in the New York Times’ article [“Lack of Study Volunteers Hobbles Cancer Fight,” Aug. 2 ), oncologists buy chemotherapy drugs at a discount from the drug companies and then charge insurance a higher price, pocketing the difference. In addition, they charge insurance for giving chemotherapy.
So if it’s not clear whether a patient will benefit by getting chemotherapy, the oncologist is more likely to give it.
It’s also true that the drugs probably always have some benefit, but it can be vanishingly small. Where do you draw the line?
Dr. Susan Love on Triple Negative Breast Cancer
Dr. Love on hiring a doctor:
How can women find the best doctors to prevent, diagnose and treat cancer?
- You want to shop around. A diagnosis of breast cancer — even though it feels like it — is not an emergency. You have time to get a second opinion.
- Always take a tape recorder to every medical visit. You can listen to it later until you really get it. If the doctor doesn’t like being recorded, then they’re the wrong doctor.
- Take your most obnoxious friend… because we regress to wanting to be a good little girl and wanting the doctor to like us. I do that too when I’m the patient. Bring somebody who maybe isn’t your significant other but who’s willing to speak up for you.
- Review your questions ahead of time.
Links to Vitamin D3 Research
- The Vitamin D Council is a wealth of science-based information
- Grassroots Health has been an advocate for better health through adequate D3 levels for over a decade
CAM
- This 2004 document from the Society for Integrative Oncology grades CAM applications like meditation, acupuncture, massage, music and yoga as to effectiveness Rating CAM therapies for stress reduction, supportive care during BC treatment
- Ann Fonfa calls herself a “woman with breast cancer and an attitude”. She was unable to tolerate chemotherapy after surgery so she made lifestyle her medicine. Her platform is education and advocacy through her website and annual conference http://annieappleseedproject.org/
- Electricity and Healing: Novocure is a company that has been doing trials on using low-level electric fields to interrupt cancer cell division. Here is a Ted-Med presentation describing the use of this device. It is not invasive, generates impressive results and may improve a patient’s quality of life: Electric Field Therapy
Chemosensitivity and Metabolomics
[Personal note: My mother died in 2007 of the side effects of chemotherapy that was considered the “standard of care” for her non-small cell lung cancer. We found out about chemosensitivity analysis and, on the advice of an integrative oncologist in Arizona, purchased a Greek assay that isolated circulating cancer cells from blood and tested them against traditional and natural agents to see what would kill them. According to the Greek test, the chemo she was being given was ineffective for her particular subtype, but another chemical (used commonly in breast cancer) would have been effective. When her cancer continued to spread, the oncologist immediately jumped in with the second drug, although mom’s body was too weak to tolerate additional chemo.
Note: An integrative oncologist I respect has told me that the Greek assay should no longer be used, although he himself at one time recommended it. There are better companies, and he currently sends his samples to Rarecells in France for the ISET test (see section on circulating tumor cell testing).
In 2008 I met Dr. Nagourney at a conference in California and learned that his company, Rational Therapeutics, does a type of sensitivity analysis using frozen tumor cells from pathology, as well as cells from pleural effusion. Here is a 2011 TED Talk in which he discusses the rationale behind this testing: Dr. Nagourney on “Metabolomics” ]
The Business of Cancer
- The breadth of the business model is well illustrated by TV ads, ever escalating prices for medication, and big alliances, like National Comprehensive Cancer Center, a consortium of 27 of the leading cancer centers with established and coordinated treatment guidelines.
- com is a consortium of “America’s Leading Pharmaceutical Companies” with a glossy website to sell targeted and immunotherapy by leading hospitals. This ad is now playing nationally and borrows from Dylan Thomas to hit home with patients and their family members.
Gene science made simple
- a 3-minute video on gene regulation by Blair Lyons How Genes are Regulated: Transcription Factors
- Gene Regulation by Bozeman Science–a more in-depth, 10-minute discussion by Paul Anderson
Books/Websites/Resources of Interest
- Evidence-Based and plant-based nutrition information from Dr. Michael Greger, in short, pointed video blogs: nutritionfacts.org. His book, How Not to Die, has several chapters on cancer;
- Neal Barnard started the Physicians Committee for Responsible Medicine, The Cancer Project and the Food for Life Program to disseminate plant-based health and nutrition information. For info on the PCRM legislative focus, educational programs and conferences, recipes and books (his new book is The Cheese Trap) see: www.PCRM.org
- Ralph Moss, PhD, offers comprehensive reports on integrative, complementary and alternative treatments by specific cancer type: CancerDecisions.com
- Keith Block, Integrative Oncologist in Chicago, wrote Life Over Cancer and has a website and blog
- Radical Remission, Surviving Cancer Against All Odds by Dr. Kelly Turner; find more information on her site radicalremission.com
- Environmental Working Group: Toxin information, consumer guides, advocacy on key issues related to protecting our global and personal environment
- Dr. Nasha Winters, The Metabolic Approach to Cancer
- Travis Christofferson, MS, Tripping Over the Truth
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