1. < Breast Cancer

Atypical lobular hyperplasia: Did you have surgery?

Posted by delormv @delormv, Aug 29, 2022

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 🙏

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Sue Ellen Murrey | @semurrey | Aug 24, 2023
In reply to @fronterae "I was diagnosed with ALH and microcalcifications in December 2022 and had excisional biopsy on December..." + (show)
@fronterae

I was diagnosed with ALH and microcalcifications in December 2022 and had excisional biopsy on December 30th. They are monitoring me with MRI and mammogram every 6 months. In my last mammogram July 2023 they found more clusters of microcalcifications. I had one biopsy August 1 and another one August 16, same breast different locations. Both have ALH and microcalcifications, one radiologist suggested surgical consultation for the first biopsy and other radiologist suggested monitoring for the second biopsy. My surgeon suggested for the first one just monitoring and waiting for his response for the second one. I know it’s not cancer but a high risk patient. Do I need to get a second opinion?

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Thinking of you and yes certainly a second opinion is warranted! I go to Dana Farber in Boston and I know they like Mayo have a team that covers second opinions. Based on others here your ALH is a certain subset and needs a team that is well versed in that subset. Please keep us posted...xo

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maureenmckean | @maureenmckean | Aug 24, 2023

I didn’t have ALH. I had ADH. I Think they are similar but not sure. I had surgery to remove the microcalcifications ADH area. I think they also want to make sure the pathology report confirms no cancer. The biopsy might miss the cancer. I had a great pathology report with no further ADH seen. But I had one small spot.

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lesleesjourney2024 | @lesleesjourney2024 | Oct 26, 2023
In reply to @rebecca55 "Did you have any signs that you had the LCIS?" + (show)
@rebecca55

Did you have any signs that you had the LCIS?

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Rebeca my name is leslee anne. I just had a breast reduction and durning surgery they found ALH with a 27% change of cancer. I have read some of your post and I am going to the oncologist at Mayo in AZ in December for an MRI. Very concerned and trying to get more answers .

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lesleesjourney2024 | @lesleesjourney2024 | Oct 27, 2023
In reply to @nanny23 "Mine turned into full blown breast cancer because my doctor left it there. He said he..." + (show)
@nanny23

Mine turned into full blown breast cancer because my doctor left it there. He said he was going to watch it monitor it. Three years later was breast cancer lobular aggressive cancer. I pound up getting a double mastectomy and implants. They found a different kind of cancer in my other breast. I got good treatment at Sloan Kettering and thank god I’m still here. That was 20 years ago. Atypical cells turn into cancer. Hope you are well and have a merry Christmas

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Nanny my name is Leslee and I just had a breast medical reduction and my pathology report came back with ALH in my right breast. The doctor has referred me to the oncologist at the mayo clinic in Arizona in December to take an MRI to do further tests. What is your thoughts and I have a 27% chance of getting breast cancer in the future.

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1 reply
mchler73 | @mchler73 | Oct 27, 2023
In reply to @lesleesjourney2024 "Nanny my name is Leslee and I just had a breast medical reduction and my pathology..." + (show)
@lesleesjourney2024

Nanny my name is Leslee and I just had a breast medical reduction and my pathology report came back with ALH in my right breast. The doctor has referred me to the oncologist at the mayo clinic in Arizona in December to take an MRI to do further tests. What is your thoughts and I have a 27% chance of getting breast cancer in the future.

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I would definitely get a 2nd opinion!
My initial biopsy said I had ADH (I think ALH is similar) and I had surgery to remove it and that biopsy came back as extensive, level 2 DCIS but they ALSO found an extremely rare Invasive Metaplastic Carcinoma.
If I would have just gone with the first biopsy results and did not do surgery, in the long run, the outcome would have been much worse.
Hopefully that is not the case with yours, but much better to be safe than sorry.

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2 replies
mchler73 | @mchler73 | Oct 27, 2023
In reply to @mchler73 "I would definitely get a 2nd opinion! My initial biopsy said I had ADH (I think..." + (show)
@mchler73

I would definitely get a 2nd opinion!
My initial biopsy said I had ADH (I think ALH is similar) and I had surgery to remove it and that biopsy came back as extensive, level 2 DCIS but they ALSO found an extremely rare Invasive Metaplastic Carcinoma.
If I would have just gone with the first biopsy results and did not do surgery, in the long run, the outcome would have been much worse.
Hopefully that is not the case with yours, but much better to be safe than sorry.

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Oops sorry, I meant to reply to @delormv

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1 reply
delormv | @delormv | Oct 27, 2023
In reply to @mchler73 "Oops sorry, I meant to reply to @delormv" + (show)
@mchler73

Oops sorry, I meant to reply to @delormv

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@mchler73 No worries! Thank you for the response! 🙂

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lesleesjourney2024 | @lesleesjourney2024 | Oct 27, 2023
In reply to @mchler73 "I would definitely get a 2nd opinion! My initial biopsy said I had ADH (I think..." + (show)
@mchler73

I would definitely get a 2nd opinion!
My initial biopsy said I had ADH (I think ALH is similar) and I had surgery to remove it and that biopsy came back as extensive, level 2 DCIS but they ALSO found an extremely rare Invasive Metaplastic Carcinoma.
If I would have just gone with the first biopsy results and did not do surgery, in the long run, the outcome would have been much worse.
Hopefully that is not the case with yours, but much better to be safe than sorry.

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Thank you so much. I am on it. I hope you are okay and love, live life everyday.
Leslee anne

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nbrooks | @nbrooks | Oct 28, 2023

I have recently been diagnosed with Lobular Carcinoma In Situ (LCIS) in both breast. I have Atypical ductal hyperplasia in my right breast. My surgeon went in and took a biopsy from both breast. I am so blessed to be able say it came back clean. I would definitely move on with a surgical biopsy. I wouldn’t risk anything at this point since all of this leaves us with a much higher chance of getting cancer.

Nancy Brooks

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2 replies
lesleesjourney2024 | @lesleesjourney2024 | Oct 29, 2023
In reply to @nbrooks "I have recently been diagnosed with Lobular Carcinoma In Situ (LCIS) in both breast. I have..." + (show)
@nbrooks

I have recently been diagnosed with Lobular Carcinoma In Situ (LCIS) in both breast. I have Atypical ductal hyperplasia in my right breast. My surgeon went in and took a biopsy from both breast. I am so blessed to be able say it came back clean. I would definitely move on with a surgical biopsy. I wouldn’t risk anything at this point since all of this leaves us with a much higher chance of getting cancer.

Nancy Brooks

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I agree. I’m glad yours came back clean. Keep up the check ups. Yes I have an appointment at the mayo in Arizona in December to get the MRI to see where I’m at. Keep living laugh and love the best way we can. Keep you posted.

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