Anyone dealing with Atypical Ductal Hyperplasia (ADH)?

I found this information dated for the year 2023.

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?

Welcome to Connect @elsajohnson @ckf1317 @icya2282.
This is absolutely the right group, and I'm so glad you've joined this incredible community. According to the American Cancer Society, women with Atypical Ductal Hyperplasia (ADH) are at a higher risk to develop breast cancer as women without it. But they also note that most women with ADH don’t develop breast cancer. Still, having ADH means you need to regularly follow up with your doctor for breast cancer screenings. Here's more detailed information from Mayo Clinic: https://www.mayoclinic.org/diseases-conditions/atypical-hyperplasia/symptoms-causes/syc-20369773

You are not alone in experiencing the frustration of not being taken seriously by your doctors; if there is one thing I've learned from Connect members it's not give up until you find the right physician who can help you in the best possible way. With regard to BI-RAD, here's what I found:

Doctors use a standard system to describe mammogram findings and results. This system (called the Breast Imaging Reporting and Data System or BI-RADS) sorts the results into categories numbered 0 through 6.
Definition of BI-RAD 6: Known biopsy-proven malignancy – Appropriate action should be taken. https://www.cancer.org/cancer/breast-cancer/screening-tests-and-early-detection/mammograms/understanding-your-mammogram-report.html
Are you able to get a second opinion from an oncologist, @elsajohnson?

I'm tagging @roch as she recently shared her diagnosis of focal ADH, and I'd also like to invite @violetita07 @cindylb @diane12 @casualobserver to join in with their thoughts about preventive/prophylactic mastectomy. You can view the discussion taking place on Connect, here:
https://connect.mayoclinic.org/discussion/bilateral-mastectomy-or-not/

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

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

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?

I found this information dated for the year 2023.

I’ve found this that probably anwers your question.

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.