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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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fronterae | @fronterae | Feb 5, 2023
In reply to @keepshining2003 "Hello, I am 44 years old just found out I have atypical hyperplasia. How many of..." + (show)
@keepshining2003

Hello, I am 44 years old just found out I have atypical hyperplasia. How many of you on here had the surgery to remove it? How many just kept doing the mammogram every 6 months and taking tamoxifen? Did tamoxifen did you bad or any side effects. Any comments on this would be so helpful. Thank you.

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Hi, I was diagnosed with atypical lobular hyperplasia in my right breast. Had excisional biopsy to remove it on 12/30/22.Had genetic test done waiting for results and have an appointment with oncologist to see what she recommends.

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1 reply
rebecca55 | @rebecca55 | Jan 21, 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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No I didn’t

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delormv | @delormv | Jan 21, 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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Hi @rebecca55, I’m not sure what the signs are of LCIS.

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rebecca55 | @rebecca55 | Jan 21, 2023

Did you have any signs that you had the LCIS?

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4 replies
rebecca55 | @rebecca55 | Jan 21, 2023

I was diagnosed with ALH & had it removed.

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rebecca55 | @rebecca55 | Jan 21, 2023

I did have mine removed. My surgeon sent me to an oncologist and wanted to put me on Tamoxifen. I am not going to do this. Will continue with alternative screening every six months. I am scheduled to have an mri screening this coming April, 2023

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rebecca55 | @rebecca55 | Jan 21, 2023
In reply to @delormv "@rebecca55 thank you so much for responding and sharing your experience. After your appointment with the..." + (show)
@delormv

@rebecca55 thank you so much for responding and sharing your experience. After your appointment with the oncologist, would you mind sharing the recommendations? Thank you 🙏

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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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2 replies
Langold | @rarelybees2889 | Dec 26, 2022
In reply to @colleenyoung "Welcome @rebecca55, I know being diagnosed with atypical lobular hyperplasia is scary. You kinda of feel..." + (show)
@colleenyoung

Welcome @rebecca55, I know being diagnosed with atypical lobular hyperplasia is scary. You kinda of feel like a ticking time bomb. I know fellow members like @amolson @wendles @elsie37 @dmart37 @smaac001 @keepshining2003 @jdriver @leesal123 and @delormv have been there too.

I'm glad that you are being referred to an oncologist to discuss your options for treatment and monitoring. Be sure to share your fears and concerns about take tamoxifen. They can carefully lay out the risks and benefits of taking the medication or not for you specifically. As your mind starts to race, making notes of questions to ask can help make that worry into something constructive to help you prepare.

I hope you have family around you for the holidays and it will help to distract you while you wait for your appointment.

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Diagnosed with that and even worse, LCIS. After several years of careful monitoring, I am still in the clear. Its not really cancer, but ups our risk for it. Ots scary

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rebecca55 | @rebecca55 | Dec 25, 2022

I had it removed. My breast surgeon is sending me to an oncologist. The tissue that was removed was atypical lobular hyperplasia

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drummergirl | @drummergirl | Dec 25, 2022
In reply to @rebecca55 "How old was your daughter?" + (show)
@rebecca55

How old was your daughter?

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50

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