Posted on: Aug 9, 2021 08:55PM

gretchen2021 wrote:

Hello everyone,

First time poster here. Knowing that every single one of us has a unique story to tell, I want to share my story so far and see if anyone can share relatable experiences.

I had a mammogram about two years ago when I was 47 that showed a network of calcifications throughout the upper half of my right breast (hadn't had a mammo the five years prior; had a "clean" one around age 42). I have small, heterogeneously dense breasts.Radiologist scored it as birads 4. Followed that up with one of those fine needle biopsies and was told I had atypical ductal hyperplasia (ADH). Radiologist recommended an excisional biopsy. Talked it over with a breast surgeon and we agreed to do some waiting and watching, primarily because the area of calcification is so large and my breasts are so small - any meaningful amount of tissue excised is going to leave me disfigured. I've had follow up mammograms every six months since then. No change in the calcifications that the radiologist can detect but who knows - the breast is different every time they take these images. The post-mammogram report now gives a BI-RADS score of 3.

After the last mammogram and follow up with the breast surgeon, the surgeon floats the idea of a mastectomy with this logic: If she does an excisional biopsy, there's no way she can get all the calcifications without destroying the breast. She'd have to remove more than half of an already small breast, and the cosmetic end result would be terrible. She argues that it would be better to remove the entire breast (and do reconstruction) because if we only take a small excision, it would still leave lots of calcifications and there's no way of knowing about the other calcifications. She thinks I would just be back for more excisional biopsies in the future. The radiologist, on the other, thinks that the excisional biopsy, even if the surgeon didn't get all the calcifications, would at least give us more data. He thinks we'd find more ADH. He says if I were his sister, he'd advise me to get surgery. But he says he'll go along with what the surgeon advises.Af

There's one more wrinkle: after the last mammo, after the surgeon recommended thinking about a mastectomy, she says there's one more thing to try before making a decision - a breast MRI. I had that and it was completely clean. No detection of any issues whatsoever. And if I understand correctly, an MRI is more sensitive to finding cancer, especially in dense breasts.

Now the next step is yet another repeat mammo in September and follow up with the surgeon. I've been stressed about this for well over two years. It just feels like an impossible situation. I can do repeat mammos/MRIs every six months. I could opt for the excisional biopsy but that would not nearly remove the troubling calcifications and thus even if the tissue removed comes back clean, I will still worry about the remaining calcifications. Or I could opt for a somewhat prophylactic mastectomy, which kind of just blows my mind. That's a pretty big gun for ADH which, while high risk, may not turn into anything more serious. The other thought is I should definitely get another set of opinions - take all the test results to a new radiologist/surgeon team and get a second opinion.

I had absolutely no idea when I went to that mammo a few years ago how many million shades of grey there are with this.