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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k7schult | @k7schult | Apr 30, 2023

Hello! I have recently been diagnosed with ADH and FEA from a core needle biopsy sample that was ordered due to a suspicious grouping calcifications found on mammography. I understand that ADH is considered benign but also pre-malignant, so excisional biopsy will be next in the standard protocol of treatment to fully rule out DCIS or invasive cancer. My understanding is that if diagnosed with ADH, a woman has a 7% chance of developing breast cancer (either DCIS or invasive) within 5 years, and a 13% chance within 10 years. I'm trying to understand these numbers more accurately -- does anyone on this thread know if these statistics include women who have undergone the standard treatment -- excisional biopsy and then 20mg of tamoxifen for 5 years -- or does it include the entire population of women with ADH whether or not they have had treatment. I want to get an accurate understanding of how much standard treatment would reduce my risk of developing DCIS or invasive cancer.

cinzia80 | @cinzia80 | Apr 30, 2023

In reply to @maureenmckean "No advice. I was just diagnosed with ADH Wednesday from a biopsy taken due to suspicious..." + (show)

Hi @maureenmckean ,
I’m in more or less the same situation.
How did the excisional biopsy go?

cinzia80 | @cinzia80 | May 1, 2023

In reply to @tigerjulie "Glad you posted as I’m in a similar place. Core needle biopsy showing ADH and waiting..." + (show)

Hi @tigerjulie ,
I’m in your situation.
I’ve been scheduled fir a surgical biopsy next week.
After a diagnosis of ADH they want ti rule out the possibility of underlying DCIS or invasive tumors.
How did your surgery go?

maureenmckean | @maureenmckean | May 2, 2023

In reply to @cinzia80 "Hi @maureenmckean , I’m in more or less the same situation. How did the excisional biopsy..." + (show)

Sorry for the late reply. After the biopsy found ADH the did a lumpectomy or they also called it a partial mastectomy. They didn’t find anything further suspicious surprisingly! So I feel like I dodged a bullet for now. Given the small amount of ADH they found the breast surgeon did not recommend tamoxifen. I will be closely monitored every 6 months with mammograms and MRI since ADH puts you at a higher risk for breast cancer. Please let me know how you are doing!

cinzia80 | @cinzia80 | May 2, 2023

In reply to @maureenmckean "Sorry for the late reply. After the biopsy found ADH the did a lumpectomy or they..." + (show)

Thank you for your reply! I hope I’ll have your luck.
I’m scheduled to have surgery on May 9th.
How was your recovery from surgery?

resort | @resort | May 2, 2023

In reply to @k7schult "Hello! I have recently been diagnosed with ADH and FEA from a core needle biopsy sample..." + (show)

My surgeon told me “it’s high risk benign”. So I had lumpectomy to remove it. No further treatment needed. However, I also have invasive cancer on another breast. So after mastectomy on another breast, I would receive with AI or Tamoxifen. Still going through chemo.

cinzia80 | @cinzia80 | May 4, 2023

In reply to @k7schult "Hello! I have recently been diagnosed with ADH and FEA from a core needle biopsy sample..." + (show)

I’ve found this that probably anwers your question.

debbie2721 | @debbie2721 | May 5, 2023

In reply to @cinzia80 "I’ve found this that probably anwers your question." + (show)

I found this information dated for the year 2023.

cinzia80 | @cinzia80 | May 5, 2023

In reply to @debbie2721 "I found this information dated for the year 2023." + (show)

Article of September 2022
On the Mayo Clinic website.

maureenmckean | @maureenmckean | May 6, 2023

In reply to @cinzia80 "Thank you for your reply! I hope I’ll have your luck. I’m scheduled to have surgery..." + (show)

Good luck! It’s so stressful. I felt like my life was on pause until I knew it wasn’t cancer. My recovery was fine. First day or two sore. I could have gone back to work if I had a desk job. I ended up taking a week due to my job.

I will say a prayer and send positive vibes for you on May 9th