Atypical lobular hyperplasia: Did you have surgery?

I'm sure that a Moderator will soon welcome you officially to Mayo Connect but wanted to mention that atypical lobular hyperplasia has been mentioned on a few other threads here as well. And you might find some answers by checking them out as well.

Just search for atypical lobular hyperplasia using the magnifying glass icon in the upper right corner of this web page. Welcome to this cybercommunity.

Hi @delormv, having already had DCIS in your left breast, I can imagine that you're concerned about no treatment for atypical lobular hyperplasia found in your right breast. I'm tagging fellow members @cindylb @casa @tommie57 @sorrel to share their ALH experiences with you. Additionally @kk57 and @pharmmom4 also had ALH at the same time as having breast cancer in the other breast.

You might also wish to see this discussion that @elsie37 started a little while ago.
High risk, NOT from BRCA but from typia, such as ALH, ADH, LCIS https://connect.mayoclinic.org/discussion/high-risk-not-from-brca-but-from-typia-such-as-alh-adh-lcis/

Mayo Clinic suggest surgery as a treatment option.
"Atypical hyperplasia is generally treated with surgery to remove the abnormal cells and to make sure no in situ or invasive cancer also is present in the area. Doctors often recommend more-intensive screening for breast cancer and medications to reduce your breast cancer risk." Read more here
- Atypical hyperplasia of the breast https://www.mayoclinic.org/diseases-conditions/atypical-hyperplasia/diagnosis-treatment/drc-20369778

Delor, have you considered a second opinion?

Thank you for the above information!

Just had a lumpectomy last week and pathology is showing ALH, will the radiation i have to have kill the ALH cells?

Welcome, @wendles
I moved your message to this existing discussion that @delormv recently started so you can connect with other members with ALH experience. See
- Atypical lobular hyperplasia: Did you have surgery? https://connect.mayoclinic.org/discussion/atypical-lobular-hyperplasia/

Radiation isn't always offered as a follow-up treatment to surgery. Was radiation recommended for you Wendles?

Hi Wendles,
I was not offered radiation as treatment for ALH. Since I’m on anastrozole for previously having invasive DCIS, my surgical oncologist isn’t recommending surgery at this time. I’m wondering if others had surgery to remove the atypical cells. I will probably seek a second opinion.

You asked if others had surgery to remove atypical cells. Yes, but the purpose was not to remove a threat. The purpose was to examine those cells and the surrounding area for cancer. In my experience, radiation is not part of the treatment plan for atypia such as ALH. Second opinions are always a good idea and that's one reason I was at Mayo. Good luck to you.

Hi, I was diagnosed with DCIS in my left breast with focal microinvasion. Then was sent back for a second biopsy, also the left breast, for a nearby small area that was then diagnosed as ALH. The surgeon has informed me that any lumpectomy would include removal of the DCIS and the area of ALH. Because I have small breasts (small A cup), the surgeon is actually recommending a Mastectomy vs. lumpectomy. Since I have Stage 0 and an area of pre-possible cancer this is very hard to accept and understand.
Has anyone been in this situation? Does this make sense.
My surgeon is from a well-known and respected hospital. I do trust the surgeon but it is difficult because I don't even know what questions to ask.
I also wonder that I have not been referred to an oncologist - does that make sense as well? Perhaps since I don't actually have a malignancy there is no reason for an oncologist?
Thank you

Hi @dmart37 I have not been in this situation exactly, but what your dr is saying does make sense. I had invasive DCIS which bumped up my stage to stage 1, which required an oncologist to become involved. That was a year ago and now I have been diagnosed with ALH in my right breast and I want it removed. I totally understand your confusion around your diagnosis and not knowing which questions to ask. I would ask if an oncologist is warranted, what are my treatment options, how much of the breast is involved, is a mastectomy my ONLY option, is reconstruction after a mastectomy an option….? I hope this helps and I wish you well! 💗

Thank you so much for your thoughtful response. Your information and personal experience are very helpful.
I am meeting to discuss reconstruction possibilities with a plastic surgeon within the next week. A lumpectomy is possible but the success is 50/50 and the breast area impacted, while small for some people, would be larger than optimal for my size.
My preference would be to do the lumpectomy however the concern is that if this is done that it would limit reconstruction options if this didn't work. Something to talk to the plastic surgeon about I know.
This website has been so helpful. Since DCIS and ALH are either stage 0 or pre-cancerous, it has made this whole thing hard to discuss. The few people I have mentioned my diagnosis to always say "good thing you got this early" - and then go on to provide details about a friend or themselves who had a later stage cancer and went through various treatments and thankfully ended up fine and have an almost unnoticeable scar from the surgery. I then say yes, that is amazing, and then never want to mention anything to anyone again. I wonder if anyone else feels like this sometime?
I hope all goes well for you with your decision on what to do with the ALH - this must be difficult after just going through the DCIS. The what ifs are always hard. My best wishes go to you.