Anyone dealing with Atypical Ductal Hyperplasia (ADH)?

Posted by EJ @elsajohnson, Aug 7, 2018

I am sorry if this is not the right forum. I know ADH is not cancer and this is a breast cancer forum, but I can't find another forum that may be more relevant.

I am wondering if there is anyone who is dealing with ADH or has been diagnosed with ADH that can share their experience. I was diagnosed a month ago. While I am relieved that I don't have cancer, I am confused with the radiology report that shows BI-RAD6 - surgical removal is recommended. I have seen a breast oncology surgeon and I don't think she took me seriously because I don't have cancer. It almost feels like I wasted her time seeing her because I don't have cancer. If ADH is no big deal, why BI-RAD 6 (which i understand is for biopsy proven malignancy). I also read up about ADH online and understand that with ADH, my risk for breast cancer is 4x. Should I not worry about it and just do annual check? Should i see another breast surgeon? Should I see an oncologist? Do I need genetic testing to better understand my risk? I feel like an impostor for even posting this on a breast cancer forum but I am genuinely confused and concerned. Any help will be greatly appreciated.

Interested in more discussions like this? Go to the Breast Cancer Support Group.

kal25 | @kal25 | Feb 13 12:27pm

I was diagnosed with multiple Atypical ductal hyperplasia (ADH) 2 1/2 years ago as part of a tissue examination after a breast reduction. I saw a surgeon but the tissue was already removed. I seen an oncologist every 6 months and on the post cancer medication. First Anastrozole with terrible side effects and now on Extemestane for another 2 1/2 years. Initially I had an MRI but now on the standard yearly mammograms. There is no breast cancer in the family but my sister and I have the diagnosis of Daughters of DES with another type of increase risk of Breast cancer. My sister did have breast cancer last year. So the cancer meds are a preventative treatment. I recommend an oncologist. Blessings to you.

charlie65mcm | @charlie65mcm | Feb 12 9:30pm

Right now we are pre surgery. Everything seems to be hinging on what is removed when that happens. In the mean time the idea seems to be pills that will inhibit my estrogen, I’m speaking with volunteers from acs, I will be speaking with a mind body expert, a nutrionist and I’ve spoken with my integrative oncologist and will see him again a few weeks after surgery. I’m also trying to deal with the stress and anxiety this brings with meditation and meditation sleep. I’ve covered everything at work and dealt with my disability paperwork.
I find it hard to separate my brain from my emotions.

Colleen Young, Connect Director | @colleenyoung | Feb 12 8:31pm

In reply to @charlie65mcm "New to this part of life… how do I deal? I’ve been in a state of..." + (show)

@charlie65mcm, I moved your question about how to deal with this new diagnosis to this discussion so you can connect with other members facing "what next?" decisions:
- Anyone dealing with Atypical Ductal Hyperplasia (ADH)?https://connect.mayoclinic.org/discussion/anyone-dealing-with-atypical-ductal-hyperplasia-adh/

Atypical hyperplasia of the breast is the development of precancerous cells in the breast. Atypical hyperplasia of the breast isn't breast cancer. But it's a sign that you have an increased risk of breast cancer in the future. You can read more about ADH here on Mayo Clinic's website:
- Atypical hyperplasia of the breast https://www.mayoclinic.org/diseases-conditions/atypical-hyperplasia/symptoms-causes/syc-20369773

@charlie65mcm, has your doctor suggested frequent monitoring or treatments to reduce your risk of cancer? How are you doing?

charlie65mcm | @charlie65mcm | Feb 2 11:58pm

In reply to @charlie65mcm "New to this part of life… how do I deal? I’ve been in a state of..." + (show)

Yes I believe so

Chris, Volunteer Mentor | @auntieoakley | Jan 29 7:16pm

In reply to @charlie65mcm "New to this part of life… how do I deal? I’ve been in a state of..." + (show)

Hello @charlie65mcm are you referring to atypical hyperplasia?

Miriam, Volunteer Mentor | @mir123 | Jan 29 5:59pm

In reply to @charlie65mcm "New to this part of life… how do I deal? I’ve been in a state of..." + (show)

Welcome to Mayo Connect. If you are comfortable, can you tell us a bit more about your situation? How was this diagnosed? Is there suggested treatment? What doctors are you talking with? Am I right in understanding that this is not cancer but represents a risk of cancer? (Apologies if this is not accurate.) Thanks for any details you can add.

charlie65mcm | @charlie65mcm | Jan 29 3:58pm

New to this part of life… how do I deal? I’ve been in a state of shock since I was told I have atypia.

travelbugtwiggy | @travelbugtwiggy | Dec 3, 2025

In reply to @travelbugtwiggy "I came here to share my story after searching for similar situations here. Screening ultrasound a..." + (show)

@travelbugtwiggy

I came here to share my story after searching for similar situations here.

Screening ultrasound a few months ago found a BI-RADS 4 suspicious mass on the small side. Biopsy report didn't state ADH straight up. Comments/results said 'fragment of intraductal low-grade proliferation with mild atypia'.

The first breast surgeon I saw didn't explain anything, just said to get an MRI with and without contrast but surgery would be next step. Didn't even ask me if I had any questions before leaving the room in a hurry (she had no other patients before or after me). The appointment left me with more anxiety and questions.

I started doing research online, and found that there are recent studies that question the standard of care (surgery) as a one-size-fits all for ADH.

MRI was BI-RADS 2, no enhancement anywhere, including the biopsy site.

2nd breast surgeon was a lot more prepared, explained her thought process, and why she didn't recommend the 'text book' approach for my case, but rather to take the close-surveillance route - alternate ultrasound with mammogram + MRI every 6 months for 2 years. She answered my questions about her experience in dealing with patients with similar DX, where she thought I was on the risk spectrum, what she'd seen in practice when it comes to the results of the close-surveillance plan, etc. She talked about the benefits of the close-surveillance route vs. the risk of immediate surgery. She even talked about how she'd perform the surgery to maximize cosmetic results. It was so refreshing to talk to a specialist like her with years of experience who sounded like a normal person.

I have an appointment to see a 3rd surgeon in 2 weeks. She is getting their own radiologist and pathologist to look at the images and biopsy slides.

I feel that with these 2 surgeons I will be well covered.

All 3 surgeons are from well-respected cancer centers near me. I am very grateful that I have the access that I do. I am also grateful for online resources like the Mayo Clinic where patients find information, compassion and support from each other.

I am sharing this for others who have similar DX, who feel they are 'in-betweens' (not cancer but also not 'everything is ok') with questions and concerns about their individual care plan - not all doctors are the same, find one who listens, shows that they understand you and your case as a unique individual, and shows up being prepared to explain and answer all your questions.

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Update from consultation with the 3rd breast surgeon. Their own radiologist and pathologist looked things over. 2nd pathologist (and verified by another pathologist) looked at all the slides and determined it is usual ductal hyperplasia, not ADH. They also calculated my lifetime breast cancer risks based on that. ADH carries a 4 to 5x risks which warrants a very different treatment path. Very relieved and thankful.

lifetraveler | @lifetraveler | Nov 25, 2025

In reply to @oregonmbcsurvives "@lifetraveler I’m a male metastatic estrogen positive cancer (spread to lymph nodes). Definitely increased joint pain,..." + (show)

@oregonmbcsurvives

Hi! Thank you so much for your suggestions! I'll have to look for someone to teach me Chi-gong locally:)

Thanks again for sharing your effective experience with us!

oregonmbcsurvives | @oregonmbcsurvives | Nov 25, 2025

In reply to @lifetraveler "@cindylb Hi! Cindy: I came upon this posting of yours that dated on 8/11/2018 and was..." + (show)

@lifetraveler
I’m a male metastatic estrogen positive cancer (spread to lymph nodes). Definitely increased joint pain, but exercise mitigates the pain quite nicely. Chi gong practice has been particularly effective at joint pain relief.