Anyone dealing with Atypical Ductal Hyperplasia (ADH)?

Hi! I’m 51 now, but a year ago I was diagnosed with ALH. My doctor did an excisional biopsy. He sent me to an oncologist and she suggested tamoxifen ( but I’m not using it because all the side effects that it can cause). I’m in a close monitoring with mri and mammograms every 6 months. I had DNA testing and was negative. But my sister had DCIS at the age of 36. In June 2023 I had my mri and in July 2023 my mammogram which again came back with 3-4 clusters of microcalcifications. I did one biopsy in August 1st and after that one I did another in August 16 in other area. Both came back with ALH. I just received a call from the breast surgeon’s office that I’ll be close monitoring and that he’s not recommending surgery this time. So I need to wait until my next mammogram in December. This situation make me anxious and nervous.
My insurance provided me with an expert opinion, I’m waiting from them to collect all my medical records in order to receive the the expert opinion/second opinion. Once I receive that opinion I’ll decide if I’m staying with the my breast surgeon or find a new one.

Hello there. I am very happy to have found this forum. I am 49 years old and just had a breast biopsy last month. I received the results from my breast specialist and she informed me that I have ALH (Atypical Lobular Hyperplesia). I asked if she would remove the small mass but she said that it is no longer “standard of care” to remove it. I found this very odd. She told me that I will have testing every 6 months to monitor the situation and that I should see a Medical Oncologist. The oncologist will discuss medications that can reduce the risk of breast cancer. In addition, I will be having genetic counseling this week. Has anyone else gone through this? And can anyone tell me if their breast specialist told them that removing the mass (ALH) is no longer standard of care?

I’m 53 now but was diagnosed with ADH in September at 52. Biopsy followed by lumpectomy. Nothing further was found. I’m not taking any drugs but they will do the mri/mammogram alternating ever 6 months. Interesting how some take medication. Maybe it’s because they only found a small amount of ADH so that’s why I don’t need meds.

Hey there. Yes. I’m scheduled for bilateral mastectomy in 2 weeks. I had a cluster of Micro calcifications that led to stereotactic biopsy. That failed to obtain the calcifications so lumpectomy was scheduled. In the interim, pathology of the biopsy shows (totally unexpectedly and coincidentally ) ALH (lobule). Lumpectomy removed calcifications (benign) but found also diffuse ADH and ALH. greater than 3 foci puts risk at 49%. So. Off with the breasts. I’m 52, vegan, non smoker, no BRCA bad genes. Very athletic. I need my pec muscles so have opted for expanders and above pec implants. For me, 6 month checks and MRIs and drugs ARE not my cup of tea. I’d rather excise the risk now, and heal from that, vs a 50/50 risk of having to do it anyway, AND go through fighting cancer, chemo and radiation. I feel v fortunate and grateful to have found it so coincidentally. And have no hesitation taking proactive preventative steps. It’s clearly a very personal choice...I researched read, interviewed multiple surgeons, researched more etcetc. This is the decision that feels unequivocally authentic for me. Hugs to you. Xxx

I’ve had the surgeon, oncologist, my gyn and internist advise removal. Are they just backing eachother up???

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?