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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Sorry I pushed the wrong key. What I like to comment is that When we take AIs . The chance is ONLY 1-2% increase the survival rate. According to University of Cambridge "PREDICT" Anyone can go to their web-site to find out if you are interested. I think you are the lucky one anyway.

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Profile picture for songfamily2025 @songfamily2025

Sorry I pushed the wrong key. What I like to comment is that When we take AIs . The chance is ONLY 1-2% increase the survival rate. According to University of Cambridge "PREDICT" Anyone can go to their web-site to find out if you are interested. I think you are the lucky one anyway.

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@songfamily2025 I would like to say that this statistic might be your statistic, but it isn’t always the case. This is why they do the testing to figure out what your personal benefit will be from endocrine therapy.
Did you have any of this advance testing or was this just a number thrown out for you?

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Profile picture for Chris, Volunteer Mentor @auntieoakley

@songfamily2025 I would like to say that this statistic might be your statistic, but it isn’t always the case. This is why they do the testing to figure out what your personal benefit will be from endocrine therapy.
Did you have any of this advance testing or was this just a number thrown out for you?

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@auntieoakley I tried to get more answers with further lab testing but they didnt get enough tissue they said. They tried twice. There just seems to be conflicting results with Leterzole and sometimes womens cancers return even after taking it.

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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 havent started going to a support group yet because radiation zapped my energy but Im going too. I had Hodgkins Lymphoma in 2001 with 6 months of chemo and side effects continued long after. Knowing the chemo worked and Im almost to my 25 years since I was diagnosed I believe in the science and I know what it can do. That said Ive read alot about ILC and it seems research is newer for this type of breast cancer than the others. I guess thats why Im interested in knowing how other women are actually feeling while taking Letrozole.

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Profile picture for Miriam, Volunteer Mentor @mir123

@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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@mir123
Thank you, wishing you the best too

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Profile picture for wews @wews

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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@wews
Thank you and yes a positive attitude goes a long way. I learned that when I went thru chemo years ago.

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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
Did you change eating habits? Trying to avoid certain foods? I had been working on eating better and healthier before my diagnosis. Congratulations on your 6 years thats great. Thank you for your reply

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Profile picture for Zebra @californiazebra

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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@californiazebra

Thank you for sharing. Thats good advice. Im ready to out BC on the back burner. Wish you the best.

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Profile picture for ndozier @ndozier

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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@ndozier
OMG thats what Ive done too. I finished radiation and had my rx filled but have been afraid to start it. I wanted to get my energy back first so that I would know if it was the medicine making me tired. Best wishes to you and thank you

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Profile picture for pinkjjj @pinkjjj

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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@pinkjjj
Is Ovestin prescription? Thank you for your reply.

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