Saturday, October 28, 2006

Playing the numbers

Dr. P. called me a couple of days ago to say that he had talked to the medical oncologists at OHSU and thought that because there were two tumors and at least one of them was a grade 3, that the oncotype dx test would be a waste of time and money, especially since it would take two tests, one for each tumor, at $3400 each. He said he would schedule me for an MRI for the remaining breast (as per my wishes) and get me scheduled with a medical oncologist.

I was down for the count at that point anyway, having exhausted myself from working and riding my bicycle, pretending to be an already healed person. I simply agreed with what he said, although I had doubts. However, I immediately started making some phone calls. One was to Genomic Health. Would I need two tests? Well, yes and no. We could test the largest tumor first and if that put me in the high risk category, we wouldn’t need to test the next one. Or we could do both at once. And the fact that it is a grade 3 doesn’t disqualify it from meeting testing criteria, although it’s not a negligible factor. What matters is whether it is node negative and estrogen positive. And the largest tumor was still under 2 cm which is good. This answer tallied with my own research on the subject.

Dr. P.’s office called to schedule an appointment with Dr. L., a medical oncologist. I also called Northwest Cancer Specialists and made an appointment with Dr. V. Since this is a relationship that will last for many years, I needed to start the interview process and find the doctor and the place that is right for me. And I have a number of questions.

I reviewed the numbers that Dr. P. gave me with Dr. E. (my homeopath) yesterday and they surprised me, because the case for chemo is even weaker than I remembered, statistically speaking. Here’s what Dr. P wrote down when he originally proposed chemo:

10 year survival rates for me:
83.5% chance of being alive with no further treatment
12.8% chance of dying of breast cancer
3.7% chance of dying of other causes

Improvement with other therapies:
3.8% improvement with hormone therapy (HT) alone, or an 87.3% survival rate at ten years
3.5% improvement with chemotherapy alone, or an 87% survival rate at ten years
6.3% improvement with both, or an 89.8% survival rate at ten years.


He explained while 3.8% + 3.5% do not add up to 6.3%, there are other factors that affect the numbers. Furthermore, when you graph it out, a 6.3% improvement rate in survival at ten years becomes a 12.6% improvement at 20 years.

So, my survival rate improves by 2.5% by doing chemo if I do HT (or 5% at 20 years). Those numbers do not convince me at all, considering the risks of chemo. This is why I need to talk to at least a couple of different medical oncologists. I don’t think that the case for chemo has been made yet at all. I believe that HT is warranted, despite the side effects. Of course, if we do the oncotype dx test and it puts me in the high risk group, that's a much more compelling argument for chemo. The oncotype dx test is relatively new, so all these stats predate this. Since chemo has no effect on 73% of people who are ER+ and node negative, one can extrapolate that it would be roughly four times more effective for those in the high risk group. In that case it would improve my survival rate by 10% after 10 years and 20% after 20 years. Those are the kind of stats that could convince me to do chemo. (Of course, this is speculation. I don't know if that's how this works, just as I don't know how 3.8% and 3.5% can add up to 6.3%).

It’s all a lot to think about. Next week should yield a lot more information.

Meanwhile, I frustrated by my setback. It seems that I’m not yet ready to return to work on a half time schedule. I'm certainly not yet ready to ride a bicycle. I’ll do some work from home. I’ll also get a bus pass next month and keep myself from riding my bicycle. I'll also try to keep driving down to a minimum. Yesterday I drove to appointments and by mid-afternoon I felt spacey and tired and like I was not entirely safe on the road. Driving is still not a good idea for me. I want to be all the way better but there’s still a lot of healing to do. The swelling is finally down at the mastectomy site, which is progress.

In the interests of trying everything, I got some essential oils that are supposed to be good for breast cancer, frankincense and clove. I love their fragrances. It feels so comforting to rub them on. My EFT friend, Linda, recommended them. I am so grateful for this new friendship. She has been such a help throughout this process.

Jasper came home yesterday after driving back from New York with his friend in 51 hours. Ah, to be young and totally insane. That’s like 60 miles an hour without stops, although he says that they did stop for meals. And they intended to stop longer than they did but never found a place to stop that was remotely appealing so they just pressed on. Anyway, it’s lovely to have him back. I’m so very fond of my children, who have grown up to be such delightful and amazing young men. He's willing to chauffeur me around, which will be so helpful.

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