Atypical Ductal Hyperplasia (ADH) and taking an AI like Anastrozole

Ok. We got this!! Do you think I should do lumpectomy too? Or cut yo the chase?! I’ve met with plastic surgeon (who works with doc #2). They’ve taken me through preliminaries until I decide whether to sign on the dotted line. I like you. You are smart!! I’m drawing inspiration from you. It’s like I know what I need to do, but it’s a big decision. What I don’t want is to look back and say, “I wish I had…”

I was diagnosed with ADH/LCIS after biopsy just before Christmas. I saw a breast cancer specialist and am scheduled for lumpectomy in a few weeks. I have had genetic testing a few years ago (which the type I had didn’t tell where I was on the hormone receptive bell curve for my check 2 positive genetic marker). Dr wants me to get another genetic test by Myriad or Miriam (I think that is the name?) Supposedly this will tell doctor whether taking a mini tamoxifen (5mg) or regular 10 mg tamoxifen will be appropriate course of action for 5 years as well as having the 6 month alternating 3D mammo and mri plan in place. I had a conference call with a high risk breast cancer counselor who ran my numbers on potentially getting breast cancer. Based on my family history, biopsy results and genetic check 2 marker, they tell me I am at a 63.3 % chance to get breast cancer in my lifetime. I have been praying and constantly in deep thought about getting a prophylactic mastectomy to give myself a 99% chance I won’t get breast cancer. I have a 15 year old and am 52 years old. Based on what I’ve been through, cost, stress, time, worry over the past 3 weeks, I’m weary imagining the remainder of my life with the watch and wait and careful screening approach. Hubby thinks I’m jumping the gun to consider the drastic measure. Frankly I am so confused. Doctor wants to do lumpectomy to ensure there is no cancer that might have been undetected in biopsy. Low chance I think, and so the waiting game continues…
I really like the breast surgeon I’m seeing now. Definitely I would recommend anyone switch if it’s not a good fit. I switched from an another doc whom I was not fond of his bed side manner and personality 10 years ago. I had gone in for nipple discharge and doc found that was found to not be a concern.
Anyone else talking to their doc about prophylactic mastectomy following ALH/LCIS diagnosis thus far? Thanks I’m advance!

I was dx with ADHand ALH in 2018 and had excisional biopsy (surgery) to remove the areas in question. I cleaned up my health and stress levels instead of going on Tamoxifen. Unfortunately it returned in 2019 and went through the same thing. It took me a couple of months but I went on Low dose Tamoxifen. 5mg daily. I had the screening every 6 months alternating Mammo/US with MRI. All was great until this past December 2022. They once again found the ADH in my right breast. I am going back and forth with either having surgery to remove the area or bilateral mastectomies and never have to worry again. How many times can they do surgery and remove parts of my breast. For me the low dose Tamoxifen is not the answer and I’m not sure I want to go on a higher dose. I had genetic testing and all markers for BC are negative. I am at higher risk bc of getting my period at an early age, I’m 55 and have not gone through menopause, I have dense breast tissue and ADH 3x. My breast surgeon is more concerned that I am on Tamoxifen and it still came back. The studies are showing low dose is working. Just not for me. I’m meeting with 2 other surgeons for their take on it. Also meeting with plastic surgeons to really understand what mastectomies entail and what my options are. It pays to be fully aware of your risks and options and know what you feel you can deal with. I want to know I will be here for my 2 children who are 22 and 24. So the end game is my motivator. Which is living life without worry. Tamoxifen studies only followed patients for 15 years. Then they don’t know how people did. Sooo, at 70, do I want to go through this again?? Actually, do I want to go through it again now???
Always keep in mind, There is no wrong decision.

Wow! You are giving me lots of good things to think about--starting with the diet and lowering stress. You are sooooooo right on that! I'm so sorry you are having to deal with this again. My heart goes out to you. It is a tricky business. But do I do Lumpectomy first to be sure I don't in fact have cancer and it was just missed in biopsy? Double mastectomy, although very hard, seems like peace of mind. I need to do more research on ALL that it entails--good, bad and ugly!! It is crazy how many of us are living parallel health lives. Tell me, as a side note, what are you doing to reduce stress? Yoga, meditation, reducing work load, vitamins, exercise, more sleep? I'm guilty of not being my best self on any of the above. I'm interested to hear and I'm also interesting in hearing what you decide to do. Please be in touch. Think I need to go back to plastic surgeon and discuss and see everything.

I had the CNB which diagnosed me with ADH. Had the lumpectomy and no cancer or more ADH was found. No drugs or radiation was recommended. I am just considered high risk now and will have the MRI and mammogram protocol so every 6 months I’m checked.

I wonder if there isn't a stàndàrd treatment of care when there is a diagnosis of ADH after a lumpectomy. Do all doctors reccomend AIs
and mammograms? Do they leave it up to the patient to take AIs or not? What are your thoughts?