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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kingmullen1 | @kingmullen1 | Mar 19 12:40pm

In reply to @maureenmckean "Have the surgery. It’s really pretty minor in my opinion- and gives you peace of mind" + (show)

Wouldn't call it minor surgery. It is invasive and barbaric at this point in time with all the advancements in surgical modalities. The FDA needs to approve MIS (minimally invasive surgery,) for ADH 2nd look excision. Thereby, helping hundred's of thousands of women avoid major surgery.

mchler73 | @mchler73 | Mar 20 11:43am

@elsajohnson
Hello. I’m sorry the surgeon is making you feel like you are wasting her time. Maybe consider finding a different one who doesn’t.
But I would definitely recommend the surgery because my initial core biopsy came back as ADH and I had my Lumpectomy surgery 3 months later and my Pathology came back with 2 different types of cancer. “Extensive grade 2 DCIS” and also an “extremely rare, Invasive Metaplastic Carcinoma.”
So just because the initial biopsy shows ADH, they may not know for sure until they remove all of it and re-biopsy.
Best of luck to you!