Anyone dealing with Atypical Ductal Hyperplasia (ADH)?

Hello,
So I came here searching for some type of support group, feedback or anything to help with the “in between” feeling of ADH/FEA and in the past micro calcifications. I think I found what I was looking for. This forum helps with the feelings of isolation, confusions and loneliness of ADH and the difficult decisions you have to make for a diagnosis that is not cancer. My story:

5 years ago I had a stereotactic biopsy on the right. Showed micro calcifications. Breast specialist recommended Tamixifen x5 years, I refused. At the time I was 47. Mom has had breast cancer 3 times and two of her sisters twice. My genetics are negative.

Fast forward: January 2022 I found a lump in right breast, same area. Biopsy showed fat necrosis - thank goodness right? Well an mri was done bc of my high risk and the results were discordant on the right and requires lumpectomy and on the left biopsy done on a suspicious area and found ADH/FEA which also needs to be excised.
It was recommended that I have the bilateral mastectomy with reconstruction as I am very high risk given family members. Specifically mom and precious micro calcifications and the discordant findings on mri.
I opted for bilateral lumpectomy for now since genetics came back negative. If there ia a malignancy of any kind found after lumpectomies, I will then move forward with mastectomies.
I find it so difficult to make decisions based on this very vague diagnosis. At one point you’re told it could or couldn’t turn to cancer, but at the same time recommending removing your breasts. To me that is incredibly conflicting and has/is creating SO much stress for me.
Any feedback is more than welcomed. I’m having trouble concentrating and living a normal life with minimal stress. My suregery I scheduled for 05/09/22.

Thank you all so much
Char

Hello Colleen, I was diagnosed with ADH almost 3 years ago. I am also an oncology nurse and my doctor said they do the lumpectomy because if you are diagnosed with ADH with a core needle biopsy there is a slim chance you could have some DCIS hiding. I have also seen a few take the watch and see approach. As for taking the estrogen blockers I did take them for about 2 months but decided that because of the way they made me feel it was better for me not to take them. You need to decide what is better for you. Are you going to have alternating Mammograms and breast MRIs every 6 months?

Welcome @pcarpent. Choosing the treatment best for you is tough. Keep in mind that you may not have the same side effects as your sister. If you have the lumpectomy, is further treatment with estrogen blockers also recommended?

I'm tagging fellow member @khauff @cindylb @elsajohnson @zinath123 @doyoga @trixie1313 @elsie37 @jeanadair123 to share their experiences and tips with you.

I too was just diagnosed with Atypical Ductal Hyperplasia and am not sure what to do with the diagnosis. They are recommending a lumpectomy to remove more tissue, but can't guarantee that they will get all the atypical cells. My sister also has ADH, she is on Estrogen Blocker which makes her feel horrible everyday. The surgeon is saying if I opt not to have the lumpectomy, I should at least take an Estrogen Blocker. I am almost 65, so I am not sure if I should just take a wait and watch approach. Any advice? They say I have a 15 to 20 percent chance of developing breast cancer within 25 years, but I also have 80% chance I won't. What would you guys do?

I am having preventative double masectomy beginning of september.

I completely I agree! Thank you for posting this. I am not very good with words but yes we all learn from everyone’s experiences and everyone’s experiences are different. Thank you everyone for sharing!

@monical - if you are still here I hope you won't leave our discussion because I learned something here and that's the best part of this site. I had previously assumed most, if not all, follow up excisional surgeries would be done under local and yet trixie1313 had a completely different experience as well. It's this kind of information that helps us all and helps us help each other.
Hugs

“This is not an invasive surgery and there is no need for a breathing tube unless they are doing a mastectomy.”

Hi @monical, I appreciate your including links to further information and encouraging people to do their own research and to ask questions of their care team. People also learn from the experiences of others. I reviewed the past posts in this discussion and do not see any mis-information. Rather, it contains valuable experiential information from people who have had surgery, describing what was involved for them. You are correct that some biopsies may require general anesthesia. However, as in the case with @khauff and @cindylb, some excisional biopsies can be done with local anesthesia.

Monica, I encourage you to re-read the past posts. I think you will find that no one contradicted your experience, but rather wished to learn from it. Thank you @khauff @cindylb and @trixie1313 for sharing your experiences.

Should anyone have further concerns, please contact me directly using this form https://connect.mayoclinic.org/contact-a-community-moderator/

https://www.health.harvard.edu/medical-tests-and-procedures/excisional-biopsy-of-the-breast-a-to-z
https://www.mayoclinic.org/diseases-conditions/cancer/in-depth/biopsy/art-20043922
https://www.hopkinsmedicine.org/health/treatment-tests-and-therapies/breast-biopsy
I cannot let misinformation sit. To say that the only reason to have general anesthesia (where a breathing tube is used) is if you are having a mastectomy or have health complications is just plain false. I spent countless hours researching and reading, had 3 separate physicians recommend the same breast surgeon, had 2 consultations w/ the surgeon to discuss every single aspect of the excisional biopsy, including anesthesia and her years of surgical experience . If you read the above links you will find information that supports that excisional biopsies may require general anesthesia.

For those of you who face something similar, I had the Savi Scout inserted first thing in the morning, had the surgery around mid-day, spent time in the recovery room, then back in my out-patient room and then went home - about 12 hours in total. I have declined chemoprevention therapy, just had a clean mammogram and ultrasound, a successful visit w/ my surgeon who rightfully patted herself on the back for doing a great job concealing my 2 inch scar and I have a follow-up in the new year where I will have an MRI.

Be your own advocate. Ask questions, multiple times if you need to. Find people who will be on your side. Go with your gut and don’t let anybody tell you otherwise.