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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@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!

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@maureenmckean

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

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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.

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@kingmullen1

Hi: I had something similar. Mine was years of calcium calcification's on the Screening Mammo, then having to go back for a Diagnostic Mammo on the one breast. Last year had a Stereotactic Biopsy where 11 samples were taken. Came back ADH. A year later (this year,) I had an MRI and nothing showed up. Breast Surgeon still wants to do an excision. Having a 3D Mammo Cad tomorrow. If that is ok, I think I will cancel the Excision surgery.
Surprised knowone on this thread has mentioned the brutality of these breast Excisions/lumpectomies. It is shocking to me, at this point we haven't come closer to MIS (Laparoscopy etc.) for just simple verification of cancer. It all seems very extreme to me. It is the same surgery as a person I know that had a cancerous lump removed. I spoke to one Breast doctor who also uses a Robot in other surgery and she agreed with me. She said the problem lays with the FDA and that it has not been approved as "standard of care," treatment. So if she did it, and something happened....she would have difficulty with her Mal-practice insurance. As far as I'm concerned, it should be a half inch incision. Come on FDA. Some trials are completed and great success with MIS's, so lets move along.
I realize many of you on this forum ended up getting cancer and went on to much more extensive surgery. I would and did do the same with all my female plumbing, with a cancer diagnosis. But, hundreds of thousands of women get the ADH diagnosis and DO NOT end up with cancer. It is invasive surgery and it does carry risk. Requires recovery and possibility of infection.
I wish there was push back from the Breast Cancer Organizations and Doctors, to make the need for further surgical excision, less invasive.

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I agree. It seems we haven't made much progress in the field of cancer, breast cancer specifically. It's still the same old thing! If they can discover a COVID-19 vaccine within a year, they should be able to come up with better cures for cancer.

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@resort

My biopsy showed ADH. Surgeon was not sure she could remove all the ADH given my condition. So I had a mastectomy. The post surgery pathology report could not find the ADH residual at all. Completely benign. So I had a mastectomy for a benign condition and now I’m dealing with severe skin reaction to surgical glue and wound swelling and red…

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So very sorry you have to go through the aftermath!!
❤️

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My biopsy showed ADH. Surgeon was not sure she could remove all the ADH given my condition. So I had a mastectomy. The post surgery pathology report could not find the ADH residual at all. Completely benign. So I had a mastectomy for a benign condition and now I’m dealing with severe skin reaction to surgical glue and wound swelling and red…

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I question whether a plastic surgeon isn’t better suited to do surgery on the breast. It doesn’t seem like the oncology surgeon, general surgeon?, makes many cancer- related decisions during the surgery.

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@cjketts

I agree that there needs to be something less invasive. I had a 2 mm dcis tumor removed with a lumpectomy. The size of the incision and stitches used was shocking. It seems like something like the stereotactic biopsy could be used for small tumors. Far less invasive.

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Agree!

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I agree that there needs to be something less invasive. I had a 2 mm dcis tumor removed with a lumpectomy. The size of the incision and stitches used was shocking. It seems like something like the stereotactic biopsy could be used for small tumors. Far less invasive.

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Hi: I had something similar. Mine was years of calcium calcification's on the Screening Mammo, then having to go back for a Diagnostic Mammo on the one breast. Last year had a Stereotactic Biopsy where 11 samples were taken. Came back ADH. A year later (this year,) I had an MRI and nothing showed up. Breast Surgeon still wants to do an excision. Having a 3D Mammo Cad tomorrow. If that is ok, I think I will cancel the Excision surgery.
Surprised knowone on this thread has mentioned the brutality of these breast Excisions/lumpectomies. It is shocking to me, at this point we haven't come closer to MIS (Laparoscopy etc.) for just simple verification of cancer. It all seems very extreme to me. It is the same surgery as a person I know that had a cancerous lump removed. I spoke to one Breast doctor who also uses a Robot in other surgery and she agreed with me. She said the problem lays with the FDA and that it has not been approved as "standard of care," treatment. So if she did it, and something happened....she would have difficulty with her Mal-practice insurance. As far as I'm concerned, it should be a half inch incision. Come on FDA. Some trials are completed and great success with MIS's, so lets move along.
I realize many of you on this forum ended up getting cancer and went on to much more extensive surgery. I would and did do the same with all my female plumbing, with a cancer diagnosis. But, hundreds of thousands of women get the ADH diagnosis and DO NOT end up with cancer. It is invasive surgery and it does carry risk. Requires recovery and possibility of infection.
I wish there was push back from the Breast Cancer Organizations and Doctors, to make the need for further surgical excision, less invasive.

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You should definitely see a breast surgeon and have it removed and they will check to make sure there isn’t cancer around the ADH. That was my fear and it was legitimate. I would personally have a lumpectomy and get the path report and go from there. Good luck and keep us posted. ❤️

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