Atypical lobular hyperplasia: Did you have surgery?

Posted by delormv @delormv, Aug 29 6:44pm

August 2021, I was diagnosed with invasive DCIS in my left breast. I underwent a lumpectomy, chemo, and radiation. I am currently on Anastrozole. August 2022, ALH was incidentally found in my right breast after a biopsy was performed due to microcalcifications found on a mammogram. My surgical oncologist stated that ALH does not need to be surgically removed since it is not cancer. Has anyone else been diagnosed with ALH and not had it removed? Have others had theirs removed? Thank you 🙏

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

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.

REPLY

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?

REPLY
@colleenyoung

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?

Jump to this post

Thank you for the above information!

REPLY

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

REPLY
@wendles

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

Jump to this post

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?

REPLY
@colleenyoung

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?

Jump to this post

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.

REPLY

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.

REPLY

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

REPLY
@dmart37

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

Jump to this post

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! 💗

REPLY
@delormv

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! 💗

Jump to this post

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.

REPLY
@dmart37

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.

Jump to this post

Even though a cancer diagnosis and a pre-cancer diagnosis are not the same, I believe the same feelings are triggered when given either diagnosis. Fear, denial, waiting for more info, what do I do next, how bad is it…the list goes on and on… No one is ready to hear it! It sounds as though you are not being heard when you bring up your diagnosis to others. It's hard for others to understand what a non-cancerous diagnosis like ALH or stage 0 cancer really means since it's "not cancer"…. and a "what are you worried about" type response and attitude (believe me I know because I have received the same reactions) , but hearing the diagnosis is still devastating and we just want to be heard or share our feelings/stories. Good luck with your appointment regarding your reconstruction options and hopefully you'll get some good options! 🙂

REPLY
@wendles

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

Jump to this post

hi @wendles. I was diagnosed with ALH last year, after I had a lumpectomy. originally my lump was biopsied and thought to be a phyllodes tumor but after lumpectomy, it was found to be a fibroadenoma. the ALH just happened to be in the border of tissue that they removed with the lump. I was offered tamoxifen but, and I kind of feel selfish about this, I was 37 at the time and didn't like the idea of going through menopause that early. So I asked about mastectomy, specifically a prophylactic mastectomy with reconstruction if possible. the oncologist and general surgeon told me that it was an option. 6 months after my lumpectomy I had a bilateral prophylactic mastectomy with reconstruction. I will be post op 1 year in November 2022.

I was not offered radiation therapy for the ALH. Not sure if that is something that is normally offered.

I am also new here and was just looking to view other experiences. I'm a mom of 3 and a family medicine doctor.

REPLY
Please sign in or register to post a reply.
  Request Appointment