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.

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cinzia80 | @cinzia80 | May 20, 2023

In reply to @maureenmckean "Hoping the biopsy went well and you have gotten good news on the pathology!" + (show)

Thank you @maureenmckean !
Biopsy went well. The recovery has been slower than what I thought, I must say😅
I developed a sieroma but surgeon said everything is ok.
From the hystological report it looks like I don’t have ADH but columnar hyperplasia with a focal area of FEA.

maureenmckean | @maureenmckean | May 20, 2023

In reply to @cinzia80 "Thank you @maureenmckean ! Biopsy went well. The recovery has been slower than what I thought,..." + (show)

Glad it’s not cancer!! Now you should be checked every 6 months because I believe you are higher risk. Sorry about the slow recovery. Hope you’re back to normal soon!

cinzia80 | @cinzia80 | May 20, 2023

In reply to @maureenmckean "Glad it’s not cancer!! Now you should be checked every 6 months because I believe you..." + (show)

Yes, I’m waiting to see what will be my plan. I honestly would have a double mastectomy if they gave me a chance😒 But here in Italy it looks impossible unless you have a cancer or are positive for BRCA genes😖

maureenmckean | @maureenmckean | May 20, 2023

In reply to @cinzia80 "Yes, I’m waiting to see what will be my plan. I honestly would have a double..." + (show)

Oh I didn’t know you were in Italy! Push for a yearly MRI and a yearly mammogram- that is basically how they do it here in the states. So essentially every 6 months you are seen. My husband and I dream of moving to Europe! We have Italy, Malta, and Spain on our wish list

cinzia80 | @cinzia80 | May 20, 2023

In reply to @maureenmckean "Oh I didn’t know you were in Italy! Push for a yearly MRI and a yearly..." + (show)

How funny…my husband is American and dreams every day to come back to the US😅

virginiaann | @virginiaann | Jun 23, 2023

I am 76, after years of suspicious areas in breast , this November 2022 I was called back for ultrasound & then biopsies , 2 in right breast, 1 in left breast ,radial scars I was told, all benign but had surgery on Mar 9,2023 on right breast and diagnosed with ADH saw oncologist in June who explained risk factors of medication versus just yearly mammograms ,now I’m wondering why when I was in surgery why didn’t they just remove all those atypical areas ?

bd2486 | @bd2486 | Jun 24, 2023

In reply to @icya2282 "My original diagnosis was ADH and after biopsy it was changed to stage 1 cancer. (Biopsy..." + (show)

I had a breast ultrasound because of a lump I detected and then a biopsy which resulted in a diagnosis of ADH (non cancerous) and the recommendation was to remove the tumor surgically. The reason was because it was large and that lends increase possibility for detecting cancer.
I was leaning toward going the preventative route with regular mammograms and maybe meds to decrease the production of estrogen, but now I’m not so sure. I have my GYN, the oncologist and my internist all telling me to have the surgery. Any input appreciated.

maureenmckean | @maureenmckean | Jun 24, 2023

Have the surgery. It’s really pretty minor in my opinion- and gives you peace of mind

debbie2721 | @debbie2721 | Jun 24, 2023

In reply to @bd2486 "I had a breast ultrasound because of a lump I detected and then a biopsy which..." + (show)

In a yearly mammogram calcifications were found on my left breast. They were so small that they suggested I have a stereostatic biopsy. It was so small that surgery was suggested to confirm ADH and to see if it was Ductal Carcinoma instu.
I had a lumpectomy and I didn't have DCI.
I was sent to an oncologist and was encouraged to try medication to suppress estrogen. Tamoxifen would have been prescribed but because I have the factor five mutation, tgw doctor prescribed anastrozole. The side effects can be a challenge but I am don't want to deal with cancer.