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Feb 9, 2019 · Anyone dealing with Atypical Ductal Hyperplasia (ADH)? in Breast Cancer

@bsones, so sorry to hear that you are dealing with ADH. Yes, the waiting is the hardest. Let me share with you my journey, I am hoping that will give you some comfort. My journey started at the end of May last year when I went in and did my annual screening mammogram. I was so busy at that time that I almost didn't do it, but somehow, there was this little voice in my head that kept bugging me to get it done. I had my screening mammogram on 5/30, and was called by my PCP the next day to let me know that the radiologist saw something on both sides that she wanted me to go back and do a diagnostic mammogram. I did that a week later. After the tech completed the diagnostic mammogram, she asked me to wait while she spoke with the radiologist to make sure she got all of the images needed. A few minutes later, the tech said the radiologist wanted to speak with me. I knew then that something was not right. This really came as a big surprise to me since I have been doing screening mammogram since I was 40, and have had normal results for the past 11 years. I did not feel any lumps or pain in my breast, I had no discharge, no inverted nipple, etc. As a matter of fact, my PCP just did an annual exam on me a couple of weeks earlier and didn't find anything. I am overall very healthy and in general, eat well. Never in my wildest imagination did breast cancer come into my radar screen.

The radiologist told me that I had microcalcifications on the left side and 2 masses on the right that are suspicious, and that she needed me to do a biopsy on both sides (stereotactic biopsy on the left and ultrasound guided biopsy on the right). The biopsy results showed I have ADH on the left and 2 fibroadenoma on the right. I first went to see a breast surgeon who suggested surgery/lumpectomy for the left. He didn't say anything about my right side. I then went to the breast clinic at Mayo to get a 2nd opinion. The breast surgeon at Mayo gave me options to do a lumpectomy for the left or just wait and monitor the ADH if I wanted to. She also referred me to see an oncologist at Mayo. I decided to have a lumpectomy done at the end of August. Thankfully, there was nothing other than ADH after the pathology report came back. I am on a 6-month monitor schedule currently and am due for my next (the first after the surgery) in March. The surgery was really not that bad. My left breast felt a little swollen the day after, but the pain was very manageable and was really almost nothing by the 3rd day or so. The area where the lumpectomy occurred felt hard in the beginning, but it is now almost back to normal. You can see the incision line but not that awful-looking. Overall, my surgery went very well and was really no big deal.

I then saw an oncologist in September who prescribed tamoxifen to reduce future breast cancer risk. I had some trouble sleeping and with hot flashes in the first few months since I started taking it in Oct last year, but I am now getting to used to it and the side-effects are minimal. My oncologist also referred me to a dietitian and a genetic counselor. My genetic testing came back with no breast cancer genes. I believe I have taken all of the precaution steps that one can take for ADH. I am now on a monitor schedule and will have to see how it goes.

Please feel free to ask questions. I know the feeling when I first found out about ADH and had no place to turn. This forum has been wonderful. I am happy to answer any questions you may have.

Aug 9, 2018 · Anyone dealing with Atypical Ductal Hyperplasia (ADH)? in Breast Cancer

Hi Kananz, thanks again. Interesting info on targeted therapy? Will this be something that I need to discuss with a breast surgeon? My primary gynecologist? Or an oncologist?

Aug 9, 2018 · Anyone dealing with Atypical Ductal Hyperplasia (ADH)? in Breast Cancer

Hi Kanaz, thanks so much for the reply and the confirmation that I am in the right forum. I can’t tell you how much that means to me. Ever since my diagnosis, I have felt that I am I this twilight zone: not cancer, but benign and yet not really entirely benign. I don’t want to people to think that I am one of those who makes a big deal of a small health issue, but at the same time, based on what I read about ADH, I am not exactly sure ADH is just something that is no big deal.

Thanks also for the link on the Bi-RADS meaning. That was my understand also re: BI-RADS 6, which is supposed to be biopsy proven malignancy. This is why I am confused to see this on my radiologist report after the CNB with ADH finding. No, I haven’t seen an oncologist yet. Since I don’t have cancer, can I see an oncologist? Will an oncologist see me since I don’t really have cancer?

Aug 7, 2018 · Anyone dealing with Atypical Ductal Hyperplasia (ADH)? in Breast Cancer

Thanks for the reply. Yes I already had the core needle biopsy about a month ago (after diagnostic mammogram that showed microcalcifications). And from that, the pathology report shows ADH. Based on that, the radiologist report indicated final finding as BI-RAD 6 – surgical removal recommended. This was what prompted me to see a breast surgeon in the first place

Aug 7, 2018 · Anyone dealing with Atypical Ductal Hyperplasia (ADH)? in Breast Cancer

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.