Sunday, September 6, 2009

What is NOT wrong with this picture ?

The phrase "above all, do no harm" is usually attributed to the Hippocratic Oath. Hmmm...if this is true, then it begs the question: what is NOT wrong with this picture . . . ?

I spent a full month researching and locating the "top" breast cancer specialists in Arizona. I narrowed the search down by personally interrogating (I mean, interviewing) the reported "best of the best." Those who made my final cut (OUCH!) were fully vetted. When I speak to the lay people involved in the ICBC, Inc.* I got, and still get, the collective nod of approval. (visualize bobble-head dolls.) This should give me peace of mind, no? (and I am not referring to the bobble heads). Having such a prestigious medical team should allow me the needed space to relax and trust in their learned opinions, right? After all, I chose them. So, if this is the case, then WHY is it...

...that I had to ask my medical oncologist to order a PetScan? Each varied member of the med-pro squad kept talking about the integral information that a PetScan can provide to assess the need and breadth of adjuvant treatments. Not to mention that the results would significantly add to the conversation of prognosis. Despite this apparent necessity not one of the Med-Squad wrote a script for a PetScan, until I insisted.

...that I had to request my medical oncologist send my tumor to the only lab in the U.S. that conducts an Oncotype DX test on malignant breast cancer tumors. Recall back to the PSA on August 31.. Why did I have to be the one to ask when my cancer, prima facie, fits the criteria to be tested. And, the results of this test can be a key factor in whether and what adjuvant treatment(s) would have the greater positive impact soup.

...that the "insurance compliance division" of the Oncotype DX lab is required to inform me, prior to running the test, that my health insurance policy (and I am talking about top-of-the-line PPO coverage) may not cover the cost of the test, unless the ICBC, Inc.*  is satisfied that the test is medically necessary?

Whaaaa ??? Rewind !!! Let's review the facts:

(1) According to a Journal report of the American Society of Clinical Oncology, 85% of patients don't benefit from chemo; and according to a talk this summer given by the head of the International Genome Consortium (Bob Pennie), the number is actually 90% of patients do not benefit;

(2) that the standard "cookie cutter" dispense of chemo is 8 cycles and the cost of the 8 cycles is 2x the cost of the Oncotype DX test;

(3) that the medications prescribed to help mitigate the nasty little side-effects of chemo can run up to 1/2 of the cost of the Oncotype DX test; and

4) that these same nasty little side-effects can create long term health issues that have the potential of running up unimaginable costs for both the insurance company as well as...oh yeah...the one with the cancer.

The silver lining to this disconnected thinking is that the Oncotype DX lab has its own in-house appeal division to deal with the idiocracy of the insurance company. The lab, Genomics in California, offers a free-of-charge 3-tier appeal process because they deal with this reactive thinking all the time.

Those who want to maintain the current health care status quo would point to the lab's "enlightened service" as an example of how the market system works. I.e, a need was identified and the market forces filled it! my world, this mental myopia is a cancer in and of itself.

And what about the promoted adjuvant, Tam-toxic-fen?

Tamoxifen is a "Selective Estrogen Receptor Modulator" intended to be prescribed to women with DCIS (ductal carcinoma in situ) -- a non-invasive disease, and which is reportedly 99% curable without Tamoxifen. This "wonder drug" has been proven to quickly cause thickening of the uterus - a precursor to uterine cancer. Indeed, Tamoxifen increases the risk of two types of cancer that can develop in the uterus: endometrial cancer, which arises in the lining of the uterus; and uterine sarcoma, which arises in the muscular wall of the uterus. In the initial trials of Tamoxifen in the 1970s, a significant amount of women died, not of their breast cancer, but of endometrial (uterine) cancer. Like all cancers, endometrial cancer and uterine sarcoma are potentially life-threatening. As such, the World Health Organization thought it prudent to list Tamoxifen as a "cancer-causing" drug. In addition, the Med-Pros appear to gloss over not only the 2x higher rates of endometrial cancer in women with breast cancer, but also the increased rates in blood clot diseases (pulmonary embolism, deep vein thrombosis, strokes) and cataracts caused by the drug.

Indeed, in most of the NCI (National Cancer Institute) study results that I have reviewed, there did not appear to be any statistically significant difference in the chance of dying whether or not a woman took Tamoxifen. Nor, did there appear to be a difference in breast cancer deaths overall. There are projections of long-term improvements in survival, but they are only projections. According to the National Women's Health Network's analysis of the Tamoxifen claims, if you take out unknown, unrelated, or non-GYN cancers, the exact same number of women appear to have died in both test groups. It is also known that minority women were not well represented in this study, in spite of efforts to do so. So whatever the final results may be, they may not apply to all women.

Across the pond, in Britain's reputable Lancet medical journal, a European study showed that when Tamoxifen was taken for the standard cookie cutter 5-years, the risk of uterine cancer increased by 6.9%, and, the developed cancer was of a more deadly strain. Benraadt , Coenbergh W et al. Risk of endometrial cancer after tamoxifen treatment of …FE Van Leeuwen - … Risk of endometrial cancer after tamoxifen treatment

According to the University of Virginia School of Medicine, risk factors for endometrial cancers include: "being treated with tamoxifen for breast cancer, age 40 or over, personal history of breast cancer...."

Estronaut's assessment of Tamoxifen as a prophylactic drug play out similarly: "Taking Tamoxifen preventively simply trades one disease for another, one cause of death for another. The disease a woman trades for may be worse beyond the absolute numbers. Blood clots can cause immediate death and permanent disability. With breast cancer there is the possibility of cure or at more years of life."

So where does this translate into my situation?

First and foremost, given my lack of family history and health risks, I am in the less than 1% grouping already when it comes to my diagnosis of Invasive Lobular Carcinoma. So, again, the statistical significance of a more than 1% risk factor is not lost on me.

Second, I am in a "complex" subset grouping because of my age in developing ILC and due to the large size of my tumor (6.2 cm).

Third, although ILC can be slow to metastasize to the ovaries, my tumor markedly increased in size from diagnosis on July 8, 2009 to surgery on August 21, 2009. Ovarian cancer, while not in the classification of endometrial cancer, is in close enough physiological proximity that it gives me pause.

Lastly, thus far, I have yet to be presented with any tangible facts or reason to ingest Tamoxifen, or any other chemical for that matter, other than the size of my tumor...which was surgically removed with the rest of my left breast.

Consequently, as a woman diagnosed with ILC, if I were to ingest Tamoxifen for the standard 5 year plan, from where I sit I have a greater risk of developing uterine cancer as my blood payment for the "cure." The ICBC's solution to such a dilemma (actually told to me on two separate occasions -- with a straight-face no less) ... a prophylactic hysterectomy!

AHH! that is an enlightened market-based solution!

*ICBC, Inc. - Industrial Complex of Breast Cancer, Incorporated, a phrase coined by me to encompass the anomaly of the profit making industry that shrouds the study and treatment of breast cancer.


  1. Assuming you don't read Twisty Faster's blog, I Blame The Patriarchy, this recent post of hers seems appropriate to the discussion. I'd warn about the potentially gruesome mastectomy photos included in the post, but they're nothing you haven't seen. And felt.

    Marianne, s/v Gallant Fox

  2. Gary & Marianne

    Thank you for your readership, and thoughts. I will look at this too. I need some subversive com-patriotism.