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New LCIS: Anyone taking raloxifene?
I am 5th year,after having TNBC, did ACT chemo and radiation. Diag was DCIS, first lumpectomy the margins weren't clear, second surgery got it. No lymph nodes involved. Also did radiation. I just had a minor breast reduction on the non cancerous breast to try to achieve assymetry and they found LCIS. Naturally I am a nervous wreck due to my previous TNBC diagnosis. Oncology appt is 3 weeks away and I am reading like crazy. Looks like options are raloxifene or mastectomy. Has anyone been thru this,? Anyone taking raloxifene?
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@susanhe first off, I would like to welcome you to connect. I can imagine how fast your brain is spinning right now. I am not on raloxifene, but I didn’t want your post to go unanswered either.
You certainly have hit the jackpot no one ever wanted with TNBC, now LCIS. I would like to direct you to a page where you can ask this question and probably get all kinds of help and support.
The page is here on connect, called lobular breast cancer, let’s support each other. Here is a link;
https://connect.mayoclinic.org/discussion/lobular-breast-cancer/?pg=16#chv4-comment-stream-header
Please try not to make yourself crazy with “what ifs” this was caught at stage 0, so you are ahead of the game.
Do you have ways of managing your stress and worry during the long wait for an appointment?
I was diagnosed withLCIS and I chose the double mastectomy route. I wasn’t too thrilled about tamoxifen and being premenopausal, I am not eligible for the aromatase inhibitors. Raloxifen I heard is more effective for LCIS than tamoxifen. Unfortunately, LCIS is so rare that there is not much control studies done on it. I did read a couple of articles that were population studies done in China and the Netherlands that showed no difference in survival between surgery and no surgery. The important thing to do if one chooses the no-surgery route is close monitoring. Taking raloxifen of course would reduce the risk even more.
@susanhe, I wanted to check in on you.
I know this must be a tough wait for your appointment. In addition to @mayo101's experience with raloxifene (Evista), I'm tagging @raebaby @elizm @toomanyquestions @debra145 @lisajoann to share their experiences with this SERM (selective estrogen receptor modulator).
How do you feel about possibly having a mastectomy?
Hi, thank you for checking in, I am a wreck, so much information to take in. I have not talked with the doctors yet, 9 more days, but who's counting, ugh. Almost everything I have read about Raloxifene by users has been pretty negative and I have a tough time with many meds so that one is scaring me. The TNBC was on my left side and they discovered LCIS on the right after the pathology came back after breast reduction. (Trying to get asymmetry). IF I hadn't tried one more time for asymmetry they wouldn't have found the LCIS. I am not opposed to mastectomy at this point, I just hope they give me that option, I am not sure my insurance will pay if it's a choice I make.