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Atypical Ductal Hyperplasia AND Invasive Lobular Carcinoma
Hi all,
My first time here. Never did this before. But here goes. I was just diagnosed with Invasive Lobular Carcinoma (ILC) Stage 1, less than 1 centimeter, and Estrogen positive and gene tests negative for Brca and also two other spots identified through a MRI. Mind you, the mammogram and ultrasound did not find anything. Luckily I had the MRI. Had to have MRI guided biopsies on 2 of the 3 spots. Turned out that one is benign and the other is Atypical Ductal Hyperplasia. Has this happened to anyone else? Doctor said that the ADH makes a person's risk of cancer high risk, but that it isn't cancer and I don't need to be worried about high risk because I already have cancer. Still don't understand that. So do I have two different types of cancer?
My original surgeon has indicated that I can have a unilateral mastectomy or lumpectomy with radiation. I told her that I was thinking of a bilateral mastectomy and she said no, she wouldn't do it because her philosophy is to treat the cancer. I am a very anxious person who worries about everything. So I am going back and forth about what to do. I am getting a second opinion in a few days. But if ANYONE has any comments, suggestions or thought, I'd love to hear them.
I'm basically driving myself nuts over all this.
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Hi. I am new to the group. I do not have cancer but was diagnosed about four years ago with atypical Lobular Hyperplasia. My doctor has been recommending monitoring every six months. Mammogram then MRI. Is this the best way? It is hard not to be nervous every six months but I try not to be. Did anyone else do this?
Any information on Atypical Lobular Hyperplasia would be helpful. Thanks
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1 ReactionHi @mymedicalmystery, I was diagnosed with ALH in December 2022 after a biopsy and then confirmed with an excisional biopsy. My doctor did a genetic testing( I’m negative). Because it is not cancer they recommended monitoring every 6 months with MRI and mammograms, because I’m considered a high risk patient. They sent me to an oncologist and she recommended me tamoxifen. I’m not using the tamoxifen because all the side effects.
Last August 2023 I had two other biopsies with the same diagnostic.
I had a second opinion and the doctor told the same.
Every time I go for a mammogram or mri is very stressful.
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1 ReactionWelcome, @lisajustus1. Hearing that you have atypical hyperplasia and an increased risk for breast cancer is scary. I'm glad you reached out. When did you find out? Have you decided on preventative treatment?
@mymedicalmystery, I add my welcome to @fronterae's helpful reply. You will find several discussions where members are talking specifically about atypical lobular hyperplasia (ALH), like this one:
- Atypical lobular hyperplasia: Did you have surgery?
https://connect.mayoclinic.org/discussion/atypical-lobular-hyperplasia/