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Anyone dealing with Atypical Ductal Hyperplasia (ADH)?
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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Have the surgery. It’s really pretty minor in my opinion- and gives you peace of mind
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.
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 ?
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1 ReactionHow funny…my husband is American and dreams every day to come back to the US😅
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1 ReactionOh 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
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😖
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!
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1 ReactionThank 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.
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1 ReactionWow I didn’t realize the protocol had changed hope all is well
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1 ReactionI 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.