This is my first post, although I've been lurking and reading a lot for months. I'm in the midst of what feels like an incredibly slow process to sort out an abnormal screening mammogram, in September (2 areas of microcalcifications).
Next came diagnostic mammogram, which was deemed to BIRADS 4a (late September). Then stereotactic core biopsies of both sites (early October). One is now called "fibrocystic change" and they say it's OK. The other is ADH at the very least and described as on the ADH to DCIS spectrum. They also feel like they undersampled that site, even though they took 18 cores, because they never saw microcalcifications in the cores and there are residual microcalcifications on the post-biopsy mammogram.
I had bilateral ultrasound last week, but won't hear my results 'til Monday.
I have a surgical excision of the ADH site on Dec 15.
Other relevant background: My mom was diagnosed with breast cancer at age 69. It was triple negative, detected on a mammogram. She opted for double mastectomy (+ chemo, no rads) and a second early cancer or pre-cancer (she can't remember which) was found on the other, "prophylatic" side. I also have BIRADS D dense breasts and that doesn't seem to be changing/decreasing. I'm 50 now, been getting annual mammograms since 40. I am called back half the time, but this year is my first biopsy. Every mammogram or ultrasound tech who images me comments on how very extremely dense I am. I have no concerning gene mutations (did the Invitae high-risk breast and ovarian panel).
I'm a biostatistician, so have of course been feeding my facts into various risk calculators. This site won't let me post any of the links :(
The Tyrer-Cuzick a.k.a. IBIS model returns a lifetime risk for me of 42%.
The Breast Cancer Risk Assessment Tool (NIH/NCI Gail model) returns a lifetime risk for me of 42%.
The Breast Cancer Surveillance Consortium Risk Calculator returns a 5-year risk of 7% and 10-year risk of 14%.
My impression is that the overall message is "high risk", yes? This is obviously much higher than for "average" woman and I've found some data on the distribution of these scores in large populations and mine are basically off the chart.
I'm asking because I'm trying to organize my head for what I will do once the pathology comes back from my open biopsy.
If I only have ADH, I am worried that I will not be followed carefully enough in the future. In British Columbia, Canada, they seem to have no recognition of "high risk" unless you have BRCA 1/2, which I don't. There is no high-risk screening program except for hereditary cancer. For example, I will not be screened with MRI. But I think that's how I would be followed in the US in Europe for me (?). I think I will be able to get an ultrasound annually now.
If I have DCIS, I would seriously consider a bilateral mastectomy, although I recognize I am definitely getting ahead of myself there. But I also gather that there's a decent chance DCIS will be the diagnosis.
I'd love to hear if I'm right to perceive myself as very high risk at this point. And how someone like me would be followed in other health care systems.
ADH, surgical excision 2020-12-15
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