Anyone dealing with Atypical Ductal Hyperplasia (ADH)?

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

Please share what you find! Praying for you

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

Thank you Maureen! That's exactly how I'm feeling.
I know I just need more information about my specific case, and I'll get that over the next fortnight. And until then, trying not to totally freak out. Keeping busy and trying to keep perspective. Using this as a wake-up call for me to take better care of myself in a lot of ways.
I'm so glad you got the treatment you needed and are doing well! . . . I'm in southern RI about 90 minutes from Boston . . . I can't figure out how to message you privately?

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.

Hello there. First time poster. Thank you SO MUCH for this group. I'm 52, 5 foot 8, never smoked, BMI normal, didn't eat great (70s kid!) and have stress, light drinking, just now in menopause, 2 pregnancies with 1 breastfed and one miscarriage, no other known risk factors for BC or cancer in family tree. Never been tested genetically.
Nov. 2021: Small lump noted at routine 3D mammogram, then US, then biopsy. Clip put in. Dx is Benign Epithelial Lesion. But I remember the quizzical tone to the nurse's voice as she told me the results. Like . . "this is unusual and we can't quite figure it out." I had been on estrogen pills for 2 months. Stopped them immediately.
May 2022: Followup mammo: Report says there is NOTHING. Return to yearly screening.
May 2023: First mammo since that followup. Lump is now 2.5 cm by 2 cm in same spot. US, biopsy. First they suspected Phyllodes due to size increase. But Dx is now Atypical Ductal Hyperplasia.
WHAT THE HECK.
So . . . meeting with breast health person on Monday. Two surgical consults in the next couple of weeks. Reading over everyone's comments. I need a better look at both boobs before we make plans, to make sure it's really ADH and that it's only in one spot. Also need to get slides sent out for second/third opinion. I have family in Scottsdale so may send to Mayo and do stuff there (I'm in Rhode Island).
I do not feel confident in the radiology team that has been working on me so far. Nice people, but I'm worried that I fell through the cracks somehow. I am not convinced that it's just one spot. And after reading these boards, I see how important it is to get accurate screening. Never had an MRI (and know that I probably now qualify for one). That MBI? Mind Blown! I am fortunate that I have good insurance and also the ability to pay for some things out of pocket if needs be. So the question . . . with this diagnosis, do I get some kind of MRI or additional screening before we head to surgery? Or do I have to advocate for that on my own? 'cause I'm ready to call for that MBI appointment in the next two minutes. And . . hormone levels? Wanna check those immediately, too.
Sincerely, Type A Overachiever Worried in Rhode Island

I agree.
That is what I was told.

Sounds like you made your decision. ❤️ I was 52 and was afraid there was cancer that can’t always be detected but ADH can be a sign that it’s there. Not sure at 78 what I would do. It’s ultimately a very personal decision.

I understand what the lumpectomy is for, but due to the fact that it was noncancerous and I have no risk factors I'm questioning why I need to have it removed and instead go with the preventative strategies. ADH diagnosis statistically shows a low % of women get cancer. I'm 78 and and after 5-10 yrs, the odds are in my favor.

I believe the lumpectomy is done to confirm Adh and rule out any hidden cancer. It’s an easy procedure.