LCIS and double mastectomy

Posted by mayo101 @mayo101, 3 days ago

Hello, I have been given the diagnosis of LCIS a few months ago, not invasive yet. After reading posts about invasive lobular carcinoma and that it is more difficult to treat than invasive duct carcinoma, I am now seriously considering pushing for a double mastectomy rather than taking tamoxifen, which will just lower the risk by 50%. Is there any LCIS patient whose doctor advise against this aggressive route? My doc isn’t totally against it given my age of 52. Any thoughts?

Interested in more discussions like this? Go to the Breast Cancer group.

I know these are all the most difficult decisions, and finding all the right answers to our questions, well, that just never seems easy. We can’t tell you what to do, and I don’t have lobular cancer, but I can tell you there is a very broad discussion about mastectomies and reconstruction, where you can ask your question about that and connect with others who have asked the same.
– Mastectomy and breast reconstruction pros and cons? https://connect.mayoclinic.org/discussion/mastectomy-1/
For my part, I asked and was turned down for a mastectomy, and still wish I had gotten one. That page also deals with questions of reconstruction.
Have you discussed this with family at all?

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Many discussions center around LCIS, which can be a precursor to breast cancer (any type and not just lobular) but not cancer itself.

Most LCIS is never found on its own through scanning opportunities but usually through a biopsy for another reason.

My pathology report shows LCIS which didn’t concern my surgeon but they did find ILC.

Not sure if this will help. Perhaps it’s best to gather more opinions. ♥️

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I am 56 and I was diagnosed with LCIS a year and a half ago. I have been gathering information about LCIS since then. I am on the "every 6 month plan". I get a mammogram and a visit with my breast surgeon and 6 months later a get an MRI to watch the area and any other area that may turn up in either breast. Last year I had genetic testing done to test for a genetic link because my grandmother had breast cancer. None was found. I took Anastrozole for 6 months and I had side effects that were not tolerable for me. I read on this site that many women did not have side effects taking the estrogen suppressing drugs so I thought it was worth trying. It didn't work for me. I will never miss either 6 month appointment and if anything changes on the mammogram or MRI then I will reaccess. I am also committed to a healthy lifestyle with exercise and a good diet. I feel comfortable with this plan and have moved on with my life.

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@lisakinpa

Many discussions center around LCIS, which can be a precursor to breast cancer (any type and not just lobular) but not cancer itself.

Most LCIS is never found on its own through scanning opportunities but usually through a biopsy for another reason.

My pathology report shows LCIS which didn’t concern my surgeon but they did find ILC.

Not sure if this will help. Perhaps it’s best to gather more opinions. ♥️

Jump to this post

Hello @lisakinpa ,

I have been diagnosed with atypical lobular hyperplasia (ALH), which I know is only a marker for cancer, but I am getting a second opinion about whether it should be removed. I understand that you have been diagnosed with LCIS and was wondering if you had any treatment for it. It is written that your surgeon wasn't concerned, so what was recommended? I'm just trying to find out more information that would support the "wait and see if cancer pops up" approach, or if I should get it removed since cancer is at times found when ALH is removed. Thank you! @delormv

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Hello. Through my biopsy, I was diagnosed with invasive lobular carcinoma.

I had a lumpectomy with clean margins but my surgical pathology report noted a small amount of LCIS near the margins.

My breast surgeon indicated that LCIS is not cancer but can sometimes be a precursor although it’s quite common and usually only found when having a biopsy for another reason.

Therefore, she wasn’t worried at all and made no indications or suggestions to remove it.

Perhaps it’s because I was just diagnosed with breast cancer? I’m actually not sure. It’s been over three years and I’m doing great.

Nothing else has ever showed up during my annual mammogram.

I went on to have radiation and chemo because I’m also Her2+.

Not sure if this will help. Perhaps ask your doctor if LCIS can be found in more than one place within your breast tissue. ♥️

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