Catia Bitching Cancer

Again I’ve been sluggish at writing: I’ve been torturing myself over decisions to make regarding treatment. Then I’ve done a lot of what I do when I work on my research: I read a lot, researched a lot, found out a lot, then kept looking even after I realized that the more I went ahead the more I was reading the same stuff over and over again, no new things. That’s what I do with the dissertation, I keep second-guessing myself and never trust that I’ve learned enough. But tomorrow I’m seeing a medical oncologist, so that forced me to stop (not before having printed article over article about cancer treatment). In a nutshell, last week I went to see a radiation oncologist who told me that, because of the small 1mm. margin around one of the non-invasive tumors, he was suggesting radiation therapy. Since radiation is generally done after chemo, if chemo is necessary, he called up the medical oncologist I am going to see for the first time tomorrow, and asked him if he was going to recommend chemo (in that case, he would hold off radiation treatment until after chemo). Well, the oncologist said yes. I asked him for a special test (Oncotype DX), which supposedly predicts with more accuracy the likelihood of recurrence and the efficacy of chemo, but he said that though he could order it done if it could help me make my own decision, his mind was already made up. So I got confused…how come two different sets of good doctors (i.e. Francesca and Romeo vs. American radiation and medical oncologists) suggest such different courses? Francesca and the radiation oncologist in the US both told me that my case could get 10 doctors to suggest 10 different treatments, but that doesn’t make my decision any easier! It’s not even that easy to explain.

According to Francesca, because my cancer is hormone receptive, all I need is an aggressive hormonal approach, that is administration of the usual Tamoxifen + another drug that essentially suppresses the ovaries (thus blocs the production of estrogen – i.e., puts me in menopause). Moreover, she thinks that a 1mm. margin is not ideal but it is not crappy either and, if further surgery is not possible, then the margin is good enough, no need for radiation. For very complicated reasons, the surgeon absolutely excluded further excision to get a better margin, and the radiation oncologist does not agree with Francesca’s assessment. I’m going to ask for a second opinion on this one.

Regarding chemo, I asked around on the web, on cancer mailing lists, on websites, I emailed the National Cancer Institute. Then I looked for the guidelines of the National Comprehensive Cancer Network, which in summary do not support RT (radiation therapy) with a 1 mm. or larger margin; but do support chemo for the type and stage of tumor I had. The oncology community in the US essentially doesn’t quite trust studies that have suggested the equivalence (in terms of decreasing the probability of recurrence and/or death) of ovarian suppression and chemotherapy if used together with Tamoxifen. On the contrary, European oncologists have more confidence in those studies and are more likely to spare patients chemotherapy (with all its short and long-term side effects and risks). So, what do I choose? And if I choose to do chemo, which chemo do I choose? The type that is more toxic but more effective (and by how much?) or the type that is less toxic but also less effective?

My instinctual reaction was to take the bull by the horns. That’s the way I am, it’s sort of personality-guided. I am never subtle. And if I want to rationalize my decision, I can say that I have to go with what both European and US oncologists agree upon: that Tamoxifen and chemo increase my chances of disease-free survival. Plus I also sort-of-cheated and went on a website that technically is only for MDs, signed up as “other” and reviewed my case with their web-based tool. Some chemo regimes (the more toxic) increase my chances of being disease-free for the next 10 years by over 13% (and that is without Tamoxifen! 18% with!). That’s not peanuts! Less impressive gains can be seen in mortality rates, but already my ten-year prognosis is over 90% survival chances, even without any further treatment (though really to be precise these stats are for unicentric disease. I don’t think that similar stats exist for multicentric disease…at least I haven’t been able to find them). My prognosis is quite good then. So why do I feel so lousy?

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