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.

Interested in more discussions like this? Go to the Breast Cancer Support Group.

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 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.

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 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?

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 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?

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?

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

Hi everyone!
I’m 42 and found a 5mm mass on my yearly check up. Did a FNB and the result is atypical C3. Differential diagnosis intraductal papilloma vs ADH.
I work in the pathology dep as a researcher and my md colleague suggested a surgical biopsy to have a clear picture of the lesion.
I’m scheduled to have surgery on the 9th of May.
Of course I’m reading all kinds of papers about ADH and the likelihood of DCIS or IDC with it.
I have very dense breast and a hystory of fibroadenomas and cysts since I developed a breast. I had sonography once a year and started with mammography+ sonography 3 years ago.
No need to say I’m scared and suffering for anxiety (taking medications).
I was taking in consideration double mastectomy even before this happened and now it is the only thing I’m thinking about.
Off course all the doctors I spoke to are against it.
I’m looking to find other women with the same experience.

debbie2721 | @debbie2721 | Apr 7, 2023

In reply to @leesal123 "Good Morning, Since my lumpectomy and diagnosis of ADH 1 year ago, I have had 2..." + (show)

I was diagnosed with ADH in August 2022. I am taking anastrosal. I believe my breast surgeon told me that if I have 2 negative mammograms then I will then only have mammograms yearly. I have a mammogram in April, so I will ask her to confirm what she told me.