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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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Moderator
Colleen Young, Connect Director | @colleenyoung | Nov 3, 2022
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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@keepshining2003, so hard to make these decisions, isn't it. I moved your question about continuing to monitor vs surgery vs tamoxifen to this existing discussion:
- Atypical lobular hyperplasia: Did you have surgery? https://connect.mayoclinic.org/discussion/atypical-lobular-hyperplasia/

I did this so you can read the previous helpful posts and connect easily with fellow members like @jdriver @delormv @leesal123, who have experience with atypical hyperplasia.

Is your leaning towards surgery or monitor and tamoxifen?

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rebecca55 | @rebecca55 | Dec 22, 2022

I am so concerned when I was diagnosed with this. Had an excision to remove. The surgeon said I have a high risk for cancer. Wants me to see an oncologist. I am scared they are going to put me on Tomoxapan. There are so many side effects. So confused and scared

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1 reply
rebecca55 | @rebecca55 | Dec 23, 2022

I had mine removed and they are now sending me to an oncologist

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1 reply
delormv | @delormv | Dec 23, 2022
In reply to @rebecca55 "I had mine removed and they are now sending me to an oncologist" + (show)
@rebecca55

I had mine removed and they are now sending me to an oncologist

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@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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3 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Dec 23, 2022
In reply to @rebecca55 "I am so concerned when I was diagnosed with this. Had an excision to remove. The..." + (show)
@rebecca55

I am so concerned when I was diagnosed with this. Had an excision to remove. The surgeon said I have a high risk for cancer. Wants me to see an oncologist. I am scared they are going to put me on Tomoxapan. There are so many side effects. So confused and scared

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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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3 replies
amolson | @amolson | Dec 23, 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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Yes, I am very scared and my mind is racing all over the place. But thank you so very much for the kind words and the good advice which I will do my best to adhere to! Yes, I have a wonderful family and an amazing support and my husband, so I am blessed to at least be going into something like this with supportive loved ones! You have a very merry Christmas and take care of yourself as well. Thank you!

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drummergirl | @drummergirl | Dec 23, 2022

My daughter had ALH. They did a biopsy and they decided to watch it with 6 month checks. It disappeared on its own, but obviously they continue to monitor.

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1 reply
rebecca55 | @rebecca55 | Dec 23, 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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Thank you for your reply. My sister had breast cancer and was prescribed Tamoxifen. She became very depressed because of all the side effects. She was put on an antidepressant and made it worse. Since I have atypical lobular hyperplasia, I am not going to take this but still looking for a different medication without side effects. Wish there was a natural medication.

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rebecca55 | @rebecca55 | Dec 23, 2022
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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Yes, sure will!

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rebecca55 | @rebecca55 | Dec 23, 2022
In reply to @drummergirl "My daughter had ALH. They did a biopsy and they decided to watch it with 6..." + (show)
@drummergirl

My daughter had ALH. They did a biopsy and they decided to watch it with 6 month checks. It disappeared on its own, but obviously they continue to monitor.

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How old was your daughter?

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