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Lobular Breast Cancer: Let's share and support each other

Breast Cancer | Last Active: 3 days ago | Replies (395)
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@amolson

So I can see some are much worse off then me...but this is all so new and scary to me I thought I would get advice from those of you who have gone this route 🙁 I was just informed I have focal atypical lobular hyperplasia after my biopsy. The doctor said "this finding less likely needs to be excised further because they have a low likelihood of progressing to an invasive carcinoma" (no idea what that means yet) and she does recommend a visit with a breast surgeon to help decide on best next steps. Are there any comments or advice on what I should request or ask or do? 🙁

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Replies to "So I can see some are much worse off then me...but this is all so new..."
lisakinpa | @lisakinpa | Dec 21, 2022

Welcome to our board. I would imagine that you will probably be referred to a breast surgeon who will decide whether to remove the cells or just keep an eye on it. ♥️

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delormv | @delormv | Dec 21, 2022

@amolson I too, have been diagnosed with atypical lobular hyperplasia (ALH) I had invasive DCIS a year prior to the new diagnosis of ALH so I already had a surgical oncologist. I guess monitoring and sometimes medication is recommended for ALH. My surgical oncologist recommended monitoring only for me since I am already on an aromatase inhibitor because of the prior cancer diagnosis. I wasn’t comfortable with this recommendation because I had read that surgical removal is recommended for ALH because there might be cancer “lurking” near the atypical cells. I asked for a second opinion from Dana Farber cancer institute and the doctors there concurred with monitoring and medication approach. So, I guess my advice for you is to follow through with seeing the oncologist and ask questions about treatment options. Write the questions and answers down. Bring a friend with you to also take notes. Do a bit of research about your diagnosis so you understand what your diagnosis means. If you’re not understanding what the doctor is saying, ask for clarification. If you’re not comfortable with the recommendations, seek a second opinion. I hope this helps and please keep asking questions
you are your best advocate!

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Colleen Young, Connect Director | @colleenyoung | Dec 22, 2022

@amolson, you may also wish to see the helpful posts in this discussion about ALH:
- Atypical lobular hyperplasia: Did you have surgery? https://connect.mayoclinic.org/discussion/atypical-lobular-hyperplasia

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hobo | @hobo | Dec 23, 2022

Have you had genetic testing to see if you have genetic predisposition to cancer? Just curious? I had that done 1.5 years ago and found I was check 2 positive (increased breast cancer risk). Just received biopsy results following multiple 3D scans, ultrasound and biopsy results show:
Atypical lobular hyperplasia bordering on lobular carcinoma in situ in a background of slightly fibrotic breast tissue. Negative for atypical ductal hyperplasia, DCIS or invasive carcinoma.

Pathology is high risk and concordant. Breast surgical consultation is advised.

I’ve got a breast specialist who has been following me since genetic testing was done and he definitely wants to do lumpectomy. I worry if that’s enough???

Thankful this is not cancer, but want to get a step ahead if possible. I hope you get answers for your situation. Let’s share notes.

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