Anyone dealing with Atypical Ductal Hyperplasia (ADH)?

I am post menopause and had the same thing biopsy with ADH, and then a lumpectomy. I saw an oncologist and started Tamoxifen. I was on it for about six months at half dose but still had some of the side effects... weight gain, acne, joint pain.

I had to stop taking it for a few months because I needed surgery for a different issue.

A few months later I had a pelvic MRI done and had an enlarged ovary and thickened uterus. This is a small, low risk possible side effect of Tamoxifen. I ended up having a hysterectomy that revealed a polyp on my uterus that was hyperplasia. Luckily caught before it might have become cancer.

Again, the chances of that happening are low but something to consider discussing with your oncologist. I am going to try Raloxifene. It's not quite as effective as Tamoxifen but I have chosen not to take Tamoxifen again since I'm apparently sensitive to it.

There are many people who do very well on Tamoxifen.

Wishing you all the best!!

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.

@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!

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.

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.

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

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…

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.

Agree!