ADH, diffuse calcifications and prophylactic mastectomy?

Gretchen2021

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.

Moderators

H Gretchen2021-

We want to welcome you to our community, and tell you how sorry we are to hear of this seemingly never-ending roller coaster. This is a lot to process and endure for over two years! This is a very difficult decision and it's clear that so far you've been given options that you aren't entirely comfortable with or sure about. We would definitely recommend a second opinion, just to see if there's another option or even confirm one of the treatment suggestions you've been given so far. It's a difficult decision, to be sure, but it's one you have to be at peace with (as much as possible, anyway), and gathering as much information as possible may help you pick a path forward.

The Mods

Ilikedogs

Hi. I am so sorry about your situation - so much stress!

A little story - I have a friend who was diagnosed with stage 2 BC some years back. Her first surgeon recommended full mastectomy and then chemo and was very adamant about it. Very reputable and well-known hospital.

She got a second opinion just because. She was convinced it would be the same but just in case she got a second opinion. She even had a surgery day scheduled with the first surgeon.

Well… the second surgeon totally overruled it (he was quite incensed about that first opinion) and suggested chemo first and then lumpectomy/radiation. Her chemo worked great and shrank the tumor quite a bit so lumpectomy was not too bad at all. I don’t even think you can see the scar.

I guess the reason I am saying this is to show you that another surgeon somewhere else might absolutely disagree with this recommendation, especially after the clean MRI. I would definitely get a second opinion. And then maybe a third. Are you in a larger city with many options? And ifall of them say to get a mastectomy then your decision will also be a lot easier.

Good luck and please keep us posted.

MaryScout

Hi Gretchen2021,

I was in a very similar spot 2 years ago. I know that my choice isn't for everyone, but I chose to have a double MX w/ DIEP reconstruction (done in New Orleans). Again, it might be considered overkill by many people, but I've had other cancers before and just didn't want the constant anxiety and testing, etc. I can tell you, I'm thrilled with my results. For me, it was a great decision. For others, alternative routes are great decisions. Whatever you decide to do for *you* is the right decision. I just wanted to throw that our there if you're thinking about it. Happy to talk and share pics if you want. Sending you strong vibes of strength and peace.

Yours,

Mary

Gretchen2021

Thanks, Mary! I saw your story while I was reading the forums and I would definitely like to connect to hear about your experience because it sounds like you were in a similar boat. Can I send you a private message to chat? (in a week or so - am about to be out of town for a bit). Thanks! G.

thedisgruntledpatient

I know I'm coming in late, but has anyone suggested you take Tamoxifen to maybe shrink the calcs down? I think it is typical in the U.S. that women with ADH are offered low-dose (5-10 mg) Tamoxifen.

I also have small breasts so can very much relate to your concern about surgery mutilating them. I also had an MRI that showed no calcs, but MRI typically doesn't. However MRI is very good, increasingly good as researchers are discovering, at detecting high-grade DCIS. A few reputable people in the breast cancer industry are noting, as finding and treating ADH and low-grade DCIS doesn't appear to be having a positive impact on breast cancer mortality (40k women have died annually in U.S. for each of the past 20 years, despite DCIS now accounting for 1/5 of all BC diagnoses) as proof monitoring is all that needs to be done for low or intermediate pre-cancer. And that there is little connection between treating ADH as a means of preventing death by metastatic breast cancer.

There is a study going on at Duke University called the COMET study that is putting some women with low- and intermediate-grade DCIS into active surveillance vs. standard of care. I know you have ADH, not DCIS, but perhaps one of their researchers or doctors can offer you advice or a second opinion?

Gretchen2021

Glad you added to the thread! My saga continues with more of the same -- expensive rounds of testing but no clear path forward. Docs founds calcs in other breast so they did a core needle biopsy, as well as another one on the first breast. More of the same - ADH as well as LDH in both breasts. Surgeon/pathologist/radiologist don't have any answers for me other than monitor or cut off the breasts (since, again, the calcs are diffuse and there's no way to remove just the calcs without completely disfiguring me). The surgeon did mention something about tamoxifen as a way to see if we could calm the calcs down. But everything about this process just stinks. We have no way of knowing how or if the ADH will progress to DCIS, short of more biopsies or surgery. I honestly don't have much more information than I had after that first problematic mammogram, despite multiple mammograms, an MRI, two core needle biopsies, sleepless nights due to anxiety, and thousands of dollars in medical costs. They're doing these more and more sophisticated tests but in my case is has just led to more unknowns. It's great if they catch those small cancers early but I feel as though they finding problems they do not know how to solve.