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| waiting for surgery |
I don't normally post to this blog those details of my life that really only have to do with me and my work. I don't talk about the issue advocacy/lobbying I do, the interesting community organizing I facilitate because of my land-use neighborhood board seat, or the ways I volunteer in the local school. But as the last month has shown me, my boob-news clearly crosses over into that which effects my whole family and as it appears it will continue to do so, we'd better just start talking about it.
A routine mammogram in July turned up a suspicious clump of micro-calcifications, which led to follow-up mammograms, which led to the needle biopsy. That produced four pathologies, two of which were concerning: flat epithelial atypia (FEA) and atypical lobular hyperplasia (ALH). The flat epithelial atypia is somewhat controversial, in that some professionals call it "pre-cancerous" and others don't. One leading radiologist on the east coast told me via my step-sister Pam Schmid (who, btw, wrote the book 101 Things You Should Know About Breast Cancer), FEA is of concern because when excised, cancer is found 8% of the time. The atypical lobular hyperplasia is a significant finding in that the ecosystem that grows it also grows breast cancer. This finding of ALH raises my breast cancer risk 4x. These findings warranted a surgical biopsy, which happened on Sept 24.
The good news: no new pathologies were found with the surgical biopsy = no cancer!!!
Post-operation follow-up with my surgeon: No cancer, yeah! Flat epithelial atypia (FEA) made a reappearance in this biopsy, atypical lobular hyperplasia (ALH) did not. The surgeon explicitly said a finding of ALH on any biopsy increases my breast cancer risk 4x, and this new biopsy does not lower that risk. She stated that a careful watch-and-see protocol seemed reasonable for me now. She mentioned double mastectomy is a choice some women make to reduce cancer risk, and that she would specifically advise that choice if I found I had the BRCA gene.
Genetics counseling with specialized RN: According to this specialist, the ALH raises my cancer risk 4x, and that places me personally in the "moderate" risk category. She set my personal Relative Risk for breast cancer at 36% for my lifetime. One in three women with my risk factors will develop breast cancer. She advised me to consider a risk reduction measure like tamoxifen. She stated that 5 years of tamoxifen would have a lifetime lasting effect of reducing my lifetime risk by 86% (this contradicts what I think I've read elsewhere). She stated that a mastectomy would have a lifetime (obviously) lasting effect of reducing my risk by 90%. She felt that a watch-and-see protocol was reasonable but risky, and she advised taking tamoxifen to change my numbers. I voiced my concern with the increased risk of uterine cancer that tamoxifen brings, and she stated that tamoxifen increases that risk by 29%, raising the relative risk to 2.1%, which she felt was acceptably low for the other benefits. She recommended that I consider meeting with a preventative treatment oncologist. She did not believe my family history warranted the BRCA test (my mom's breast cancer was at 54 and there isn't any ovarian cancer anywhere) so that's good news. Several things she said seemed to contradict what I thought I'd read elsewhere. So. That's confusing. And, I don't like tamoxifen yet.
We don't really know what causes it, as 75% of the women getting their diagnosis this year will have had none of the known risk factors. In contrast, I have quantifiable risk.
There are different kinds of breast cancer, some of it is more nasty, some of it is less nasty. The "in-situ" cancers in the ducts or the lobes are often well contained to their one feature, and they can be cut out thus ending the presence of cancer. When a cancer pushes out past the contained features, into the breast tissue, this is the nasty stuff. It is then considered invasive, as the cells appear to travel and they can then show up later, in a recurrence, not only in other parts of the breast but in other body systems. If these cells quietly float out to other body systems, then it is metastatic breast cancer (MBC). As I've learned from Pam's experience, the nasty cancer, the invasive kind, can be successfully treated for many years. But. If it metastasizes, it always eventually finds a way around the drugs and then it can't be stopped. It's terminal. It may be 20 years from first diagnosis to terminal diagnosis, but it appears to always eventually be terminal. I never understood that before now.
There is no way of predicting, if I do indeed draw that card that produces cancer with my 36% of risk, if I'll first get an in-situ cancer or an invasive cancer. If I do try to play this hand a little longer, will I get the chance to adjust my strategy and go for a risk reducer later (tamoxifen or mastectomy)? And yet, how much weight do I give these risk numbers when considering drastic measures? They aren't perfect... in fact, the US Preventative Services Task Force (USPSTF) says risk assessment models have only "modest accuracy in predicting risk for individuals." Ugg.
But still, I'm lucky to have the luxury of these crap choices.
Gracious! I'm so sorry this is happening! Super scary to be facing these big choices, but as you say, better to have choices than not. And you're the best-equipped person I know to get what you need to move forward. Thinking about you a lot, Steph.
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