Does anyone have advice on Letrozole?

Posted by mj65 @mj65, Nov 15 12:44am

I was diagnosed with ILC in July and had a lumpectomy in my right breast followed by 4 weeks of radiation. Im starting Letrozole next week. Im worried about side effects but more worried about the return of the ILC if I dont take it. Thanks for any suggestions or advice

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I will be starting Letrozole next week also. I have the same concerns as you, mj65.
And I am interested, just like you, in other's advice or suggestions.
Many thanks fellow sister survivors! 🙂

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I have been on Letrozole for 15 months and have had no side effects except for dry eyes. I wish you the best.

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I have just started Letrozole also but previously was on Exemestane for quite awhile. No side affects as of yet.

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Profile picture for briarrose @briarrose

I will be starting Letrozole next week also. I have the same concerns as you, mj65.
And I am interested, just like you, in other's advice or suggestions.
Many thanks fellow sister survivors! 🙂

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@briarrose I have been on letrozole for 3 years with no real side effects. Maybe a handful of hot flashes in the first few months. My bone density is still normal. My advice would be that if you are feeling side effects you record what is going on in a daily journal. Then you can look more objectively at the trend. Also, if at all possible, try not to worry too much. You can go off this drug or have your oncologist switch AI's...basically the decision is yours. I was worried and cynical! The letrozole has kept my rare aggressive cancer at bay. So far so good. Wishing you all the best, and to everyone as well.

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I have been in Letrozole since April 2025. Just eight months. I have had some hot flashes and when I went off it for two weeks for some surgery i had to have because my one implant had capsular contraction and a seroma under the implant and had to be removed and replaced this September. I found when I was off and went back on I had terrible night sweats and hot flashes for a week but they subsided when my body got used to the drug. I have had a little hair thinning but use vegamour shampoo and conditioner and that is ok now. I also periodically have some joint pain but nothing terrible. I lift weights and work out every day with stretching and yoga and walking and doing lymphatic exercises to keep the lump system draining. I had invasive lobular cancer stage 1A grade 2 and no lymph nodes involved. I had a bilateral mastectomy in February because this type of cancer likes to come back and it reduced the likelihood of return surgically from 15% with a lumpectomy to 2% with mastectomies so it wasn’t even a hard choice to have the latter. Reconstruction went well except for this capsular contraction and there is at least one study suggesting women in AI have a greater likelihood of having it happen. I am taking singular and VIT E to counter the likelihood of it happening again. Even with the AI I am told I have an 8% chance of the cancer returning - my oncotype score was 22. Never had to do radiation or chemo thankfully. So I am taking the letrozole and being monitored regularly for cardiology and bone loss issues and having blood work
Tested regularly. I think we should remember that all drug manufacturers have to put any side effect mentioned by those in trials and just because they list it doesn’t mean it will happen to you. I am staying positive and not looking for issues but rather staying very active, eating well and breathing and stretching and weight lifting to ward off any issues. We will see what happens. I have four years and 4 months to go and am keeping my fingers crossed! Good luck to you.

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I tried all the hormone inhibitors for my hormone receptive and HER+ breast cancer. I ended up unable to take any of them because of side effects. Almost 6 years later, I'm still cancer free. It's a quality of life issue you have to settle for yourself.

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At 54 I had stage 1 BC, had a double mastectomy because I have BRCA2 and CHEK2 mutations. My oncologist told me chances were so slim of it coming back that it wouldn’t make a difference for me to take Tamoxifen so I didn’t. Skip it he said. BC came back on my chest wall 7 years later and my surgeon acted surprised I never took Tamoxifen even though she knew all along. I wish I had.

Round two of BC, I had surgery, positive margin, 37 radiation treatments and have been on Kisqali and Letrozole for 5 years now. So far so good. I also started a med for a rare lung cancer at the same time so it’s hard to say how Letrozole alone would impact me but together they are all tolerable and I’m still enjoying life.

Hindsight is 20/20 and that’s my long way of suggesting you try taking Letrozole for added protection. You can always stop if needed. Get back to enjoying your life and put any BC thoughts on the back burner. Blessings to you. ❤️

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I’ve been on letrozole for 14 months. I have joint pain, the worse is in my hands, feet, and knees. I also have skin sloughing inside my cheeks occasionally. It’s more annoying than anything. Hot flashes have been moderate and keeping me from sleeping. I’ve found that walking and exercise seems to help a little with the pain. Ibuprofen and my corn bag helps the most. I don’t want to take a chance on my BC coming back, so I’ve decided to continue on. I was afraid to start also and I had my medicine for a month before I started taking it. Stay strong and I pray your side effects are
Minimal.

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Yep, been on Letrozole since 2021. Take Vit D and calcium tablet daily. You’re supposed to do weight bearing exercise but I’m a bit slack with that, but I do walking. You won’t be able to have sexual intercourse, unless you use Ovestin. Moisturise up! Hair maybe become dry also. Use a hair mask as a conditioner. I have hot flashes a lot but I wouldn’t know if that is due to Letrozole or just surgical menopause. I had terminal metastatic Breast Cancer . Still going!

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Profile picture for ednahanvey @ednahanvey

I tried all the hormone inhibitors for my hormone receptive and HER+ breast cancer. I ended up unable to take any of them because of side effects. Almost 6 years later, I'm still cancer free. It's a quality of life issue you have to settle for yourself.

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@ednahanvey Congratulations! What a courageous woman you are! You must been through a lot treatments for HER+. Anyway, According to statistic when we take AIs the chace

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