Anyone dealing with Atypical Ductal Hyperplasia (ADH)?

I sent you a private message. Hopefully you’ll see it. 🙂

The first concern I have for you is that you feel like you can’t trust your medical team. I think finding a new team and a doctor who will explain everything will make you feel less stressed. Don’t get me wrong. It’s stressful even with a good team. I haven’t had my MRI yet. So I am not even sure what it can and can’t see definitively. But for me once I knew I had an area of ADH I wanted it out and to make sure there wasn’t also cancer. The lumpectomy for me was what I wanted asap. I felt like let’s get in there and cut it out and check surroundings for cancer. I was ready to have a double mastectomy. My doctor laughed and basically told me to slow my roll. I forget the statistics but most people with ADH do not get cancer or have cancer. I’m sure you know the statistics because when I was going through it I read everything but feared worst case scenario.
I’m 53 now but was 52 and no family history. Just showed up as abnormal microcalcifications. I was lucky that they found no further sign of ADH or cancer with the lumpectomy. I’m in Massachusetts and loved my doctor. Located in Woburn MA. Not sure how far that is for you. Message me if you want to get more info.

Having a dx of ADH - non cancerous, my doctor recommended removal of the tumor. I’m almost 79 with some other medical issues - hypertension, heart valve problem which are risk factors but I have no family history. After a lot of research I found that most women with this diagnosis do not go on to contract cancer- as little as 20% and even less in the first 5 yrs., especially in older women.
I just got a second opinion and he recommended getting a MRI which will show any cancer or changes by comparisons with the biopsy images. This seems to me the best next step. It will also show if there is any spread to the lymph nodes. Then depending on the results of the MRI a treatment plan can be chosen. I’m reluctant to have the surgery because of all of the above.
I wish you well

That sounds like a good option since it’s less invasive. I didn’t know how much an MRI can detect or diagnose. I hope you can avoid surgery!

That sounds like a good option since it’s less invasive. I didn’t know how much an MRI can detect or diagnose. I hope you can avoid surgery!

Thank you, @Kanaazperiera.
I'm happy to be part of this forum.
I think there's a consideration to be made regarding how early the condition can be detected now with the incredible imaging available... and possible overdiagnosis and subsequent treatments including mastectomies.
Protocol tells our surgeons what steps to take based on the pathology, size. etc but I'd like to know if anyone has chosen to monitor the situation rather than rush to surgery and/or radiation.
And also how important is Tamoxifen to premenopausal women that have chosen surgery and radiation in the case of stage 1 cancer with clean margins and no involvement to lymph nodes after snb results?

Hi there -- I am having a likely benign lump surgically removed in August 2023 at recommendation of pathologist and surgeon, but I'm meeting with second-opinion breast surgeon tomorrow to see if they can dial in a diagnosis before we head to surgery. Maybe it'll head off surgery, but I'm accepting that it probably won't. I'm 52, no family history, my health is wonderfully blessedly normal. Small spot showed up on routine mammogram Nov. 2021, ultrasound/biopsy confirmed "benign epithelial lesion." 6-month follow up showed nothing, so I was returned to yearly screening, and boom, the lump grew in a year's time when I got my next mammo. First they suspected Phyllodes because in a year, it grew from millimeters in size to about the size of a peanut (2.1x2.5 cm). First biopsy pathology report indicated ADH which put me in the same exact headspace you're in and led me to this forum. But they also had to send the samples out to other pathologists because they weren't sure of actual diagnosis. Now I have the report and it says there is no atypia. "You're a mystery," the surgeon said to me, "But we would be really, REALLY surprised if this was cancer." I. Hate. Surprises. Now they're just scattering out a bunch of benign differential diagnoses including Phyllodes, PASH, fibroadenoma. I know Phyllodes can also be (or become) malignant in some cases, so for that reason alone, I want it out. Even though I'd rather not have to go through surgery, we all want to know exactly what this mass IS. Bonus will be that I don't have to biopsy this same danged spot ever again! I totally understand your frustration and confusion about what to do. Can you get a second or third opinion to help guide you?