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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icya2282 | @icya2282 | Aug 7, 2018

My original diagnosis was ADH and after biopsy it was changed to stage 1 cancer. (Biopsy was 4 days after the original mammogram found a small suspicious area).
I was taken to ultrasound immediately when mammogram showed something abnormal—same day. I’m not sure what the BI-RAD 6 means, but I met with a breast surgeon once pathology of biopsy showed cancer (2 days after biopsy was performed) I had a lumpectomy 3 weeks after that and radiation a week after the surgery. In hindsight I might have kept calm and researched some more...congrats to you.
Have you had a biopsy and heard results yet?