Tuesday, March 17, 2009

Confusion

I promised an update on my visit with the oncologist, so here it is. I was a bit surprised at how uncertain and unclear she was about what was best to do in my situation. I had thought that with the Oncotype score in the "low risk" category, that there would be no question that I didn't need chemo and that I would simply have my radiation, start on Tamoxifen, and go on my merry way.

That was not the case.

Turns out that my Oncotype score is in the low risk category -- it's 15 -- and the cut off for moderate risk is 18. What 15 means, according to the test, is that I have a 10 percent chance of recurrence in 10 years (confidence interval of 7-12%). If you look at it another way, that means I have a 90% chance of NO recurrence, which doesn't sound too bad to me! But somehow, this wasn't satisfactory to her. I'm still not sure why.

If I did have chemo, the benefit in terms of preventing recurrence would be only a percentage point or 2. So that just doesn't seem worth it to me. And that's what I told her.

Interestingly, in the TAILORx study, if "the Recurrence Score is 11 to 25, the risk of recurrence is about 7 percent to 16 percent with hormonal therapy alone. Patients who have a Recurrence Score in this range will be randomly assigned to receive chemotherapy plus hormonal therapy (the standard treatment arm) versus hormonal therapy alone (the experimental treatment arm)." So even in this study, they wouldn't know what to do with me. I would get treatment by random assignment.

Because I am pre-menopausal, there is also the question of stopping the function of my ovaries. Since my tumor was fed by estrogen and progesterone, there might be a benefit to putting me into premature menopause (or temporary menopause) so that there is less circulating hormone. She gave me several study protocols to look at that are experimenting with this idea. You get a shot once a month that stops your ovaries from working, and there are other medications as well. I am considering this, but am still not 100% convinced.

What I really need to ask her is this: I understand that the conditions in my body that caused this tumor are still there, and that if we are to prevent a recurrence, we need to change the conditions. What is the best way to do that?

It's frustrating that sometimes there aren't straightforward answers. I was talking to a friend recently, and she said: If there is no one right way, it means that whatever you choose, will be the right thing. Good point.

2 comments:

AS said...

A - I would feel the same way as you. Sometimes all the research in the world still doesn't give you all the answers. So whoever gave you that sage advice: "If there is no one right way, it means that whatever you choose, will be the right thing" is very smart. And I would trust that.

RivkA with a capital A said...

I have all sorts of thoughts, based on my own atypical experience.

After my initial diagnosis of stage 0 DCIS in 2005, my treatment consisted of surgery. That's it. No radiation; no chemo.

"But," I asked my oncologist, during every follow-up visit,"what if just one cell got away? Shouldn't we do some systemic treatment?"

Every oncologist I consulted concurred with mine.

In 2007, when I was diagnosed with metastasized stage IV breast cancer, it did not help me to know that I "did everything right."

I will now have cancer for the rest of my life.

I would much rather have had chemo then, and had the rest of my life cancer-free.

Every one is different. And chemo is poison. I'm just saying...

A difference of 1 or 2% is only relevent if you fall into that 1 or 2%

(My risk of recurrance was LESS than 1%. I had a 99.9999% chance of being fine.)

Good luck with your decision!! Only you can know what is right for you!