cancer – day 47
Holy cow. So my MUGA was good and the FISH wasn’t positive, and today Dr. Lombardi told us that I don’t necessarily have to go through chemo! He’s issuing another test on the surgery tissue, an oncotype. This is apparently a very expensive test (I hope my insurance is really good and not just ok), but it tests a panel of 21 genes in the tumor tissue to establish a Recurrance Score that is exactly that, a score of the probability of a recurrence within ten years.
Now one thing to keep in mind is the thing Soe brought up about the positive hormone receptors and how that pathology tells us that the cancer feeds on estrogen & progrestrerone, which tells them that my cancer will definitely recur. It could be in 20-30 years, but it will happen.
One specific new stat Lombardi mentioned that I hadn’t found before was the specific on how rare breast cancer is in someone my age. Instead of a one in eight chance (12.5%), which is how many women will get breast cancer during their lifetime, for a woman my age the probability of getting breast cancer at this age is one in six hundred (0.16%), less than two-tenths of one percent of women.
We really need to put some effort into finding out if I have any hereditary cancer indications. Mom and Dad are going to try.
Lombardi told us about a clinical trial that I can be in to help advance breast cancer research. It’s to further the oncotype dx research. So this oncotype dx recurrence score tells us how likely my cancer is to recur within ten years, which (I think) is already five years past the time period in which chemo is known to be effective (which I think is 5 years). And here’s the really wild part . . . if my recurrence score is 26 or higher, then they know with certainty that chemo will contribute to reducing my recurrence risk. And if my recurrence score is 10 or lower, they know with certainty that chemo has absolutely NO impact in improving a woman’s likelihood of survival! So, let’s all put really positive energy towards my recurrence score being really, really low.
The clinical trial is for the in-between range, with recurrence scores of 11 through 25, where they don’t have any clinical evidence one way or the other regarding whether chemo is beneficial, or if women can just take tamoxifen without doing chemotherapy. The way the trial works is that I have to agree, before knowing my recurrence score, that I will be in the trial. Then, if my recurrence score is 10 or lower I go on tamoxifen only, if my recurrence score is 26 or higher I go on chemo and tamoxifen. But if my recurrence score is 11 through 25, then a computer random generator will determine whether I have chemo or not.
There are a couple of issues with this for me. I’m really glad Mark was with me at this appointment, because he and I were looking at it from different perspectives. I was thinking about it all in terms of the possibility that I would have a score on the high end of the range, say 25, and then the computer would randomly select me to NOT have chemo. Problem with this being that, if I were in control of the decision, I would probably have chosen, with a 25 recurrence score, to go ahead with chemo, rather than risk a recurrence that I could have prevented by getting chemotherapy. Mark looked at it from the opposite perspective, which was, what if I come back with a score in the low range, like 11, and the computer assigns me to chemo? He’s really concerned about me not being on my heart medication and what to do if I have an episode where my heart stops while I don’t have the heart medication I normally take every 12 hours. And he doesn’t want me to put myself at risk of that for a low score where I would choose, if it were my choice, not to have chemo.
But I completely understand the research and how important it is for them to get women to participate in these kind of clinical trials, and I really want to contribute to the advance of a cure for breast cancer. Ach, the agony of big decisions. I was sooooo ready for a break from big decisions, when we thought I was starting chemo on Monday. But now, here we are, another really big decision to make regarding my care and treatment. First, do I want to risk participating in the trial and being randomly selected for an option I wouldn’t choose for myself?
Sheesh, I’m such a hypocrite, eh? I finally got what I wanted, a doctor specialized in breast cancer and leading edge in research and developments in the field, and now I’m mentally resisting getting involved in a clinical trial he’s offered to me.