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Topic: Tamoxifen After BMX for Low-Grade DCIS with Microinvasion?

Forum: Young With Breast Cancer —

Connect with those under 40 who have been diagnosed.

Posted on: Jul 25, 2019 10:50AM

mzfrizzle wrote:

I'm currently three weeks post bilateral mastectomy. My pathology reports shows 3 areas of ER+/PR+ HER- grade 1 micro-invasion. I'm 29 years old, so looking to ensure the best long-term outcome.

My oncologists have indicated that tamoxifen in this situation is a consideration, not a recommendation and the specialist I went to see said that the side effects would not likely outweigh the benefits in my situation and said she felt it would be over-treatment. They predict that I have a less than 5% chance of distant recurrence and that tamoxifen would minimally move the needle in terms of benefit. Essentially, they seem to be suggesting that if I am going to have a recurrence, tamoxifen is just as likely to not make a difference as to be helpful, with potentially no increase in overall survival.

Are there folks out there who have had a similar DX and not taken tamoxifen? I trust my doctors, but am still processing the idea of not taking Tamoxifen, as I fully anticipated it would be highly encouraged.

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Jul 25, 2019 11:51AM SimoneRC wrote:

Hi mzfrizzle!

Sorry you find yourself here. It sounds like you are pretty newly diagnosed and working on a game plan. You will find a ton of smart, caring and supportive people here to chat with. I have a different profile so cannot really answer your question. I was wondering though, are you HER2 Negative or HER2 Positive?

I am sure people will be chiming in soon who have been in similar situations. Deep breaths and keep us posted

ATM Gene Mutation, Deletion. IDC w/Lobular Features and Focal Mucinous Features. Pre Pectoral Reconstruction. Hysterectomy
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Jul 25, 2019 12:05PM mzfrizzle wrote:


I'm HER2 negative. Yes, pretty newly diagnosed and trying to make decisions about what (if anything) to do beyond my surgery.

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Jul 25, 2019 01:12PM Beesie wrote:

I had a UMX for a very large grade 3 DCIS, with a grade 1ER+/PR- microinvasion. My oncologist recommended against Tamoxifen, but offered up that I could choose to take it as protection for my remaining breast. He didn't not feel that the microinvasion itself, which presents about a 1% risk of mets, was enough to warrant Tamoxifen. After doing my own research, I ended up agreeing with him.

The one big difference is that I was 49 at time of diagnosis versus you being 29.

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Jul 25, 2019 04:19PM mzfrizzle wrote:

Hi Beesie,

Thanks for your reply! My oncologist said that because I've already done bilateral mastectomy, the Tamoxifen would essentially be only for addressing the lingering possibility of a distant recurrence. Similarly to your situation, the risk is so low that she felt the side effects wouldn't be worth it and that it could be over-treatment and cause more harm than good, particularly if I don't tolerate the meds well.

My young age is the only thing that gives me pause, but the specialist I saw focuses on young women with breast cancer, so if there's anyone to trust, I know it's her. The diagnosis with low-grade is quite unusual at my age, so there is even less applicable research than the handful of pieces that seem to deal specifically with DCIS-MI. Still, I had fully anticipated having to take Tamoxifen, because it seems to be prescribed to almost all pre-menopausal women, so am processing having it not recommended by the best person I could have spoken to about this. I'm trying to see what experiences others have had to try to tame those niggling worries.

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Aug 26, 2019 11:55AM alto wrote:

I'm in my 40s and had a umx for Paget's with grade 3 DCIS (one area of microinvasion confirmed) with ~5% ER+. My oncologist recommended against Tamoxifen as the risks would outweigh the benefits. When I told my regular doctor, she nodded as she was completing the sentence for me. At that point, to be honest, I was happy to have a break.

Diagnosed at 42. Had symptoms of Paget's for years prior to positive biopsy. No Tamox because low% ER. Dx 11/2/2018, Paget's, Right, Stage 0, Grade 3, ER-/PR-, HER2+ (IHC) Surgery 11/11/2018 Lumpectomy: Right Dx 11/29/2018, DCIS/Paget's, Right, 1cm, Stage 0, Grade 3, ER-/PR- Surgery 12/19/2018 Lumpectomy: Right; Lymph node removal: Sentinel Dx 12/21/2018, DCIS, Right, 2cm, Stage 0, Grade 3, 0/2 nodes, ER-/PR- Surgery 1/16/2019 Mastectomy: Right

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