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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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mayo101 | @mayo101 | 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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Hello, I too was diagnosed with LCIS in both breasts. Do you know of a doctor whose expertise is in LCIS?

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mmichele | @mmichele | Nov 30, 2023
In reply to @dmart37 "Hi, I was diagnosed with DCIS in my left breast with focal microinvasion. Then was sent..." + (show)
@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

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Hi,
Finally, did you do a mastectomy or lumptectomy?
My condition is similar to yours...

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1 reply
dmart37 | @dmart37 | Nov 30, 2023
In reply to @mmichele "Hi, Finally, did you do a mastectomy or lumptectomy? My condition is similar to yours..." + (show)
@mmichele

Hi,
Finally, did you do a mastectomy or lumptectomy?
My condition is similar to yours...

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Hi -
I am sorry to hear this -my thoughts are with you.
I ended up doing a mastectomy. My breast was too small to take out the DCIS and and the ALH. I would have been left with a much deformed breast.

The whole thing is a process and something you have to decide on yourself. If I could make one suggestion it would be to go with a good surgeon (obviously) and one that is kind. The surgeons and doctors that are rated "best doctor" in the field may have made their name earlier and now they are too busy and no longer deserve the recognition. They show up for the initial consult and the surgery - everything else is support staff. Time is on your side - find that right doctor/surgeon for you and one that you feel cares. It does matter.

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lesleesjourney2024 | @lesleesjourney2024 | Nov 30, 2023

I had a medical breast reduction and they found that I have ALH in my right breast. I’m only six weeks out of healing from my breast reduction but I go in on December 20 for an MRI and meet with the oncologist the next day to discuss, the MRI and what they think should go on from there. At least we get a base to start with and make a plan. Yes this was actually very discouraging because after my surgery I had my check up and then my doctor walked back in and said that they found suspicious tissue , so I’m on it and I will figure it out and I will let you know. I hope that your situation doesn’t go any further, and I hope that we can both figure out what this ALH does to us in the future. .

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donnakatherine | @donnakatherine | Dec 14, 2023

I'm being treated at MD Anderson for left breast IDC. My right breast had a spot of ALH. MDA doesn't do surgery on ALH. The standard treatment is an aromatase inhibitor, which I will be taking for my left breast anyway.

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1 reply
lesleesjourney2024 | @lesleesjourney2024 | Dec 16, 2023

I hope they can cure you and you stay healthy. I i’m going for my MRI of my right breast this next Wednesday at the Mayo clinic in Scottsdale to get a baseline of the ALH.
Please keep fighting and be positive , smile, laugh and hope you have a wonderful Christmas.

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lesleesjourney2024 | @lesleesjourney2024 | Dec 16, 2023
In reply to @rebecca55 "I had my appt with the oncologist on January 17, 2023 due to Atypical lobular hyperplasia...." + (show)
@rebecca55

I had my appt with the oncologist on January 17, 2023 due to Atypical lobular hyperplasia. She wanted to put me on Tamoxifen for 5 years. I have decided due to all of the side effects my sister had to not take it. I am going to start out with testing every six months. I will have an MRI breast screening in April. I will see how this goes.

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Did you get a new test done on your ALH?

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1 reply
delormv | @delormv | Dec 17, 2023
In reply to @lesleesjourney2024 "Did you get a new test done on your ALH?" + (show)
@lesleesjourney2024

Did you get a new test done on your ALH?

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I had an MRI on December 14, 2023 due to ALH found on biopsy and no upgrade noted. Phew! My oncologist, prior to the MRI, was not recommending surgery to remove the ALH.

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kayleenchilds | @kayleenchilds | May 5 12:00pm
In reply to @donnakatherine "I'm being treated at MD Anderson for left breast IDC. My right breast had a spot..." + (show)
@donnakatherine

I'm being treated at MD Anderson for left breast IDC. My right breast had a spot of ALH. MDA doesn't do surgery on ALH. The standard treatment is an aromatase inhibitor, which I will be taking for my left breast anyway.

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I was just diagnosed with ALH. I see that you were to start on the aromatase inhibitor and I was wondering how that is going and which one you are taking. Assuming my MRI scheduled for this Wednesday is ok, my dr wants me to take arimidex for 5 yrs with frequent testing. I am kind of freaking out about this whole ordeal! Any info would be greatly appreciated!

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