I've received a lot of criticism for rejecting chemo, radiation, and five years of hormone therapy (Tamoxifen, specifically). (See our Criticism category.) I've been told that I was "just lucky" and that I was (paraphrasing here) a complete idiot for turning them down. I want to give some specific information about how solely rejecting hormone therapy helped to save my life. Read on if you don't believe me.
Studies published in 1990, 1995, and 2000 (all well before my diagnosis in 2002) provide critical information for patients with tumors that have certain characteristics. The studies all confirm that ER+/PR- breast cancers are less sensitive to Tamoxifen, and that Tamoxifen is less effective on HER2+ tumors. They further confirm the finding that the HER2 pathway interacts with the ER pathway, rendering them Tamoxifen resistant. More recently (in 2005; see the Arpino study referenced below), a meta-analysis of seven studies concluded that metastatic breast cancer over-expressing HER2 was resistant to Tamoxifen.
But here's the kicker: Women treated with Tamoxifen that had ER+/PR-/HER2+ tumors (which is what I had) had a higher likelihood of recurrence.
Let me repeat: Numerous studies show that this specific conventional treatment would have increased the likelihood that my cancer would have recurred. A big part of the message that we're trying to share is that there's a subgroup of women with breast cancer who will only get sicker from one-size-fits-all, conventional-only treatments. These cancers come back with a vengeance, and the body is substantially damaged as well from the toxic treatments that didn't work. I was in that group.
Unsettling, to say the least.
I know there are many critics out there, and the truly sinister ones will somehow find a way to dismiss these studies. I'm hoping that the more open-minded critics will at least acknowledge that we can do better. The unavoidable truth is that my conventional doctors simply missed this research. It was presented to us by our integrative treatment team.
The first question I understandably receive when sharing this part of my story in particular is, "Why? Why would your doctors recommend a treatment that is known to increase your chance of the cancer recurring?"
Based on the title of our book, I think that many people incorrectly assume that I'll give an answer such as, "Because doctors are evil!" This couldn't be farther from the truth. The majority of conventional doctors are well-intentioned people who truly want their patients to live well.
The problem is multi-faceted. First, I believe that the system in which they operate is fundamentally broken. I'm specifically referring here to the "standard of care." You see, under the standard of care in 2002 (and still today, in many cases), if a patient presents with a tumor with my pathology, he/she is told to do chemotherapy, radiation, and five years of Tamoxifen. No questions asked. No customization of treatment. No individualization of treatment, except perhaps some debate on the specific chemo cocktail. (Shockingly, chemotherapy sensitivity testing remains largely ignored as a valuable tool in preparing smarter, safer cancer treatments.) I believe that either the doctors never saw these studies that I reference, or dismissed them because the standard of care is the final arbiter of treatment decisions, even when there is evidence to the contrary. At the very least, the standard of care takes much too long to incorporate important emerging information. At worst, it leads to potentially deadly medical mistakes for those who are in the blind spots of conventional science.
Interestingly enough, I also believe that there are liability concerns for physicians who attempt to deviate from the standard of care.
The second part of the answer to the question "Why?" is that the culture of the cancer industry is also severely broken. There is a frightening closed-mindedness to anything non-conventional, to any non-conventional ways of looking at cancer, or heaven forbid, of treating cancer. As we've said many times before, it's time to stop talking past one another. Both "sides" (conventional and non-conventional) have incredible things to offer, and we need to create a system that is interested in devising the smartest, safest individualized treatment protocols for patients. Luckily, there are practitioners out there that are already doing this, such as the ones that treated me.
This inevitably means moving away from the vast amount of over-treatment that's currently being performed, and specifically the over-treating of cancer patients with highly toxic drugs that either aren't necessary, or that will only make patients sicker. Certain pharmaceuticals have their time and their place, and they can be part of an overall life-saving protocol, but not when they're used as they are currently, with no tailoring to actual patient needs, and with no cost-benefit analysis. There are better ways!
In summary, if my doctors failed (for whatever reasons) to acknowledge and incorporate these studies about Tamoxifen, what other scientific data was ignored (for whatever reasons) regarding my recommended chemotherapy and radiation? We'll be tackling these related topics in future blog posts. In the meantime, some references about Tamoxifen resistance are listed below. We encourage you to talk to your practitioners about this to make sure you're not being subjected to a medical mistake.
L.D. Read et al., "Hormonal Modulation of HER-2/neu Proto-Oncogene Messenger Ribonucleic Acid and P185 Protein Expression in Human Breast Cancer Cell Line," Cancer Research, 50 no. 13 (1990): 3947-51.
R.J. Pietras et al., "HER-2 Tyrosine Kinase Pathway Targets Estrogen Receptor and Promotes Hormone-Dependent Growth in Human Breast Cancer Cell," Oncogene 10 (1995):2435-46
M. De Laurentiis et al., "Meta-Analysis of the Interaction Between HER-2 and the Response to Endocrine Therapy (ET) in Metastatic Breast Cancer (MBC)," Proc ASCO 19 Abstract 301 (2000).
G. Arpino et al., "EstrogenReceptor–Positive, Progesterone Receptor–Negative Breast Cancer: Association With Growth Factor Receptor Expression and Tamoxifen Resistance," Journal of the National Cancer Institute 97 no. 17 (2005):1254-1261.