Anyone dealing with Atypical Ductal Hyperplasia (ADH)?

I was actually considering posting similar questions on this forum but wasn't sure it would be the right place. They found microcalcifications in a routine mammogram 3 yrs ago, I was put on a schedule of having a mammogram every 6 mths, there had been no changes, so a year ago I was released to going back to a yearly mammo. I had the mammo beginning of July, they found new microcalcifications with a dense area near them, did an ultrasound the same day, and had an opening that day to do a core needle biopsy so I took it. Didn't want to wait. The local lab had to send the biopsy to Mayo to examine and the dx was ADH. The radiologist recommended a MRI of both breasts, to make sure there were no other areas of concern, before doing a surgical excision to remove the remaining area. He referred me to a surgeon who specializes in breast cancer surgery. I had the surgery 2 wks ago, they biopsied the tissue removed and found they got all of the ADH and no cancer cells were found. I was so thankful. I asked my surgeon about genetic testing, she referred me to a genetecist. I just had the appt with him 8/6 and was told even w/o doing the testing, based upon my personal history and mostly due to the ADH dx, my chance of breast cancer went up from 12%(avg risk for my age-47) to 41%. He explained based upon that % I will require follow ups every 6mths (which the Radiologist had already indicated in his report I should have follow up MRI in 6 mos) but it also opened up other options such as bilateral masectomy or medication to lessen the chance of further changes. I am pre-menopausal and my surgeon recommended against the drugs. I am wondering if anyone else has had ADH, but not cancer, and decided to have a preventative masectomy?

Yes..I had breast cancer 3 years ago in my left breast and went through radiation
Last week I went for my annual mamo and something showed so I had a breast biopsy a few days ago and was diagnosed with atypical ductile hyperplasia . It's in the same breast that I had cancer in. Have an appointment next week with my Oncologist. Any thing I can learn about this would be appreciated

I apologize if these have been discussed previously. Anyone has advice on effective preventative methods in addition to regular screening? Are you seeing effective results from stopping ADH and or benign reoccurrence with the preventative method you are using? I understand diet, exercise and stress play a big part. It sounds like some are experiencing reoccurrence regardless. I have 3 kids and the last one was from about 6 years ago. I breastfed all three for about 6 months. 4 years ago, l started experiencing pain on the side of my left breast. Mammograms didn’t find anything. Pain went away eventually. I also started taking birth control pills about 3 years ago and the breast pain came back on and off. Last year, l had dark reddish brown discharge. Mammogram and ultrasound didn’t find anything. Breast surgeon suggested MRI and it found a 7cm enhancement and a couple small masses in the outside of my left breast. Had core needle and they found ADH. Got an open biopsy done and got the masses removed. ocologist said l’m eligible for Tamoxifen but my calculated risk was 2.5% but there could be a chance getting uterus cancer from taking the meds, so l decided to go with monitoring route. I stopped taking birth control pills after the discharge happened. Last month l started seeing a caramel color discharge on my left breast but went away after a couple days. It came back this month and l’m also feeling quick pitch on the top of my left breast when l breath hard or stress the chest muscle sometimes. Going in for imaging tomorrow.

Thank you for your comment. It's easy to spiral after an ADH diagnosis and a good reminder that many many women don't end up with cancer. I'm personally opting for preventive screenings and may see another breast specialist to assess risks and get a second opinion. The medical community and organizations have good intentions but sometimes they seem to suck you into their system of overtreatment and don't offer realistic information about/minimize excisional surgeries. When the health care orgs do their part, they save lives, but ADH requires a nuanced risk-benefit analysis and more needs to be done to really educate the patient and avoid using a sledgehammer to crack a nut.

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.

That sounds like the standard treatment. You will be screened often which is a good thing. I have the same diagnosis but I am past the child bearing age. I was given another drug first but had to stop because of terrible leg pain. You should do well and good luck.

I was diagnosed with ADH back in June. My OB GYN was very concerned so I had a needle biopsy done. That is when I received diagnosis of ADH. So I was referred to General Surgeon for excisional biopsy. That surgery was done about a month and a half ago.
Fast forward to last OB appt, I will no longer be able to take any type of birth control as the estrogen can contribute to getting breast cancer. The surgeon went over results that diagnosis is still ADH and no cancer found (YAY!), but he recommended me seeing an oncologist to possibly start treatment with Tamoxifen. I have consultation with Oncologist on Monday.