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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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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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5 ReactionsI 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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1 ReactionAgree!
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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1 ReactionHi: 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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3 ReactionsYou 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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1 ReactionThat’s terrible and you should tell the nurse how much harder it was to hear you have cancer after that.
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1 ReactionI was also diagnosed with atypical ductal hyperplasia. I just remember the nurse telling me the good news is you don't have cancer. She should not have said that. It gave me a false optimism. After biopsy they said I had DCIS. I just went for my 3rd lumpectomy because I did not get clear margins on the first two. I will get the path report Oct 5. for this last one. I just wish they had not said I did not have cancer when it ended up being cancer.
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3 ReactionsI found a large lump in my breast this past May.
The initial needle core biopsy can back as ADH.
My surgeon removed the mass and the whole thing was then biopsied.
It ended up coming back as extensive, grade 2 DCIS.
The biopsy also showed that I have a very rare invasive Metaplastic Carcinoma.
Since my first biopsy showed ADH, but it ended up being something much more serious, I would definitely find another oncologist/surgeon for a 2nd opinion!
It is my understanding that it is typical to remove all of the ADH and biopsy the whole thing.
If you are not comfortable with the response you received from the doctor, trust your gut!
Through this whole process, I have learned that you need to advocate for yourself and getting a second opinion is worth it!
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