Anyone dealing with Atypical Ductal Hyperplasia (ADH)?

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.

@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!

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.

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 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!!

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.

"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."

Well said, @ls108!

How often do you get screened? Did you decide to seek a second opinion?

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.

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

@winniekl, I wanted to check in with you. Any results from imaging? How are you doing?