1. < Breast Cancer

Anyone dealing with Atypical Ductal Hyperplasia (ADH)?

Posted by EJ @elsajohnson, Aug 7, 2018

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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kingmullen1 | @kingmullen1 | Mar 19 12:40pm
In reply to @maureenmckean "Have the surgery. It’s really pretty minor in my opinion- and gives you peace of mind" + (show)
@maureenmckean

Have the surgery. It’s really pretty minor in my opinion- and gives you peace of mind

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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.

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mchler73 | @mchler73 | Mar 20 11:43am

@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!

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krish77 | @krish77 | Aug 15 3:13pm

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.

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1 reply
debbie2721 | @debbie2721 | Aug 16 7:29am
In reply to @krish77 "I was diagnosed with ADH back in June. My OB GYN was very concerned so I..." + (show)
@krish77

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.

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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.

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1 reply
dkcbc24 | @dkcbc24 | Aug 17 11:41am
In reply to @debbie2721 "That sounds like the standard treatment. You will be screened often which is a good thing...." + (show)
@debbie2721

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.

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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!!

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ls108 | @ls108 | Aug 28 1:23pm
In reply to @kingmullen1 "Hi: I had something similar. Mine was years of calcium calcification's on the Screening Mammo, then..." + (show)
@kingmullen1

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.

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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.

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Sep 11 9:29pm
In reply to @ls108 "Thank you for your comment. It's easy to spiral after an ADH diagnosis and a good..." + (show)
@ls108

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.

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"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?

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