“We found that elevated pre-operative serum marker values were correlated with early replapse and death from disease. Possibly, the release of tumour associated antigens at the time of diagnosis proves blood supply respectively vascularization of the tumour and by consequence the possibility of already existing micrometastases and bad prognosis from the beginning.” F. Ebeling et a;. (2002). Serum CEA and CA 15-3 as prognostic factors in primary breast cancer. British Journal of Cencer, 1217-1222.

patientfromhell.jpgI am reading a really cool book at the moment — The Patient from Hell, by Stephen Schneider, a professor of Biological Science at Stanford who has documented his extraordinary and highly atypical strategies for informing himself at an expert level about a rare form of cancer, and using that knowledge effectively to significantly alter his medical care. Some days I try to be the patient from hell. I read all the information in my medical charts. I follow up by reading articles in the medical journals. I formulate questions based on my research and try my best to articulate a reasonable dialogue with doctors. It kind of works, sometimes. And it often falls flat. Schneider’s characterization of medical reasoning helps to shed light on several key factors that explain why it fails. Basically, doctors are trained to follow particular protocols, and a line of reasoning that isolates one or two findings in an If, Then logic. Add to the deficiencies in reasoning produced by this kind of linear thinking is the simple but devastating impact of economics on medical protocols. The kind of care you get is based on a cost-benefit analysis that is modeled on whole populations. There are particular shortcomings to this form of reasoning. Like, that it could kill you.

I have not been able to rest easy with my breast cancer surgeon’s decision that I should not see an oncologist following my mastectomy, and in the same vein, that I should not have any form of adjuvant therapy (like Tamoxifen, or radiation, or chemo). I am not comfortable with the biopsy finding of micro-invasion. That tells me that cancer cells could well have escaped the confines of the ducts. Yesterday, a new piece of information on my diagnostic profile blew me away — the micro-bomb. I was being a good “patient from hell” and reading my chart while waiting for my family doctor. I learned in a letter from my initial gyne surgeon consult to the internal medicine doctor who was in charge of my case while I was resident at UBC Hospital, that at the time of my breast cancer diagnosis, my CA 15-3 cancer marker was elevated, whereas it had significantly decreased post-operatively. My breast cancer surgeon had never disclosed the fact that CA 15-3 was elevated at diagnosis. And the implications are chilling.

CA 15-3 is one of the “tumour marker” blood tests that are typically done at the time of diagnosis. CA 15-3 is a cancer antigen - a protein that is shed by breast cancer cells. There is a lot of research on the prognostic value of levels of pre- and post-operative CA 15-3, and it’s not at all good news, in my case. A 2002 study reported in the British Journal of Cancer by Ebeling and his colleagues shows that amongst early breast cancer patients, “elevated pre-operative serum marker values were correlated with early relapse and death from disease.” Shering and colleagues (2000) report that amongst early stage breast cancer patients, “the probability of disease free survival at 5 years was 44% in patients with high CA 15-3 levels compared with 65% in patients with low CA 15-3 levels”. YIKES!!!

I know as a somewhat educated (in this domain) person that it would be erroneous to make huge assumptions based on one test result, but imagine not having known this upon making the decision to pursue no adjuvant therapy for breast cancer. It sure doesn’t make sense to me. Now what? Arrange for a second opinion, collect up copies of all the test scores, make a list of the key questions, go back into cancer world, keep fingers crossed, and so on, and so on… That’s my hope — to be another patient from hell who survives and thrives.

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