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.

maureenmckean | @maureenmckean | May 6, 2023

In reply to @cinzia80 "Hi @maureenmckean , I’m in more or less the same situation. How did the excisional biopsy..." + (show)

Biopsy and lumpectomy were fine. They did not find anything further in the lumpectomy luckily

elliejk | @elliejk | May 6, 2023

In reply to @maureenmckean "Good luck! It’s so stressful. I felt like my life was on pause until I knew..." + (show)

I only took day of surgery off. But I have a desk job.

maryanna9 | @maryanna9 | May 7, 2023

I just recently had a breast cancer dx in the same location I had ADH excised 8 years ago. That puts me in the 15 percent of women who go on to have breast cancer. The pure mucinous cancer (2% of all breast cancers) was found on a diagnostic mammogram that happened only because I had read that inflammatory autoimmune disease increases your risk. I asked for my risk to be newly calculated (protocols have evolved but no one advised this) and moved on to advanced screening -diagnostic mammo, ultrasound and mri. My cancer was likely missed on yearly mammos as it is slow growing and I never missed one. I'm sharing not to scare anyone but rather to encourage people tp advocate for themselves when they have questions and concerns.

dinora08 | @dinora08 | May 8, 2023

In reply to @kanaazpereira "Welcome to Connect @elsajohnson @ckf1317 @icya2282. This is absolutely the right group, and I'm so glad..." + (show)

I was diagnosed last year with atypical ductal hyperplasia had breast excisional biopsy done. However, after that there is no follow up every 6 months and no medication given. Wonder if the right path is to follow or should I get a second opinion. I'm just concerned because I have read a lot about it, and I see that it is recommended to take medication for 5 years. I would appreciate any advice thank you.

maureenmckean | @maureenmckean | May 14, 2023

In reply to @cinzia80 "Hi @tigerjulie , I’m in your situation. I’ve been scheduled fir a surgical biopsy next week...." + (show)

Hoping the biopsy went well and you have gotten good news on the pathology!

Chris, Volunteer Mentor | @auntieoakley | May 14, 2023

In reply to @debbie2721 "I found this information dated for the year 2023." + (show)

Hi @debbie2721 thank you for sharing this, it is important information. Just for my own edification, can you post a link where I can go read the article, I am very interested in this.🤓

debbie2721 | @debbie2721 | May 15, 2023

In reply to @debbie2721 "I found this information dated for the year 2023." + (show)

https://www.ncbi.nlm.nih.gov/books/NBK470258/

I hope this helps.

elliejk | @elliejk | May 15, 2023

In reply to @maryanna9 "I just recently had a breast cancer dx in the same location I had ADH excised..." + (show)

So based on your ADH you were not put on additional screening via a high risk breast center?

maryanna9 | @maryanna9 | May 15, 2023

In reply to @elliejk "So based on your ADH you were not put on additional screening via a high risk..." + (show)

I am in the Seattle area with Fred Hutch etc (so major cancer center), but 8 years ago protocol only involved diagnostic mammograms for several years and then I was moved to yearly standard mammograms. Protocol has since changed and with ADH now I would have been given a baseline breast MRI and followed more closely. I asked for a review of protocols this past January and a diagnostic mammogram and MRI were scheduled for March. My cancer was found at that time.