Does anyone have advice on Letrozole?

Posted by mj65 @mj65, Nov 15, 2025

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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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 would suggest getting a dexa scan to use as a baseline for your bone density. I have osteopenia and am concerned about the bone loss potential side effects from Letrozole.

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I saw a show on TV about a reporter who took a BC risk assessment test as part of her story. It showed she was at really high risk for BC so she was tested and to her shock she had it. Out of curiosity, I took the assessment test and answered the questions as I would have the day before I was diagnosed with BC. It stated I had an extremely low risk mainly because there was no family history of it. In reality, I was diagnosed with BC at 54 stage 1, had a double mastectomy because they discovered I had the BRCA2 and CHEK2 mutations. Then I had BC recurrence at 61. All that and the online test said I had little chance of ever getting BC in the first place. BTW, my breast surgeon was shocked when my BRCA2 test came back positive and now uses my case in her presentations as an example of not making assumptions. I agree with Chris that every case is unique and online tools alone are not the end all be all. By the same token, just because mine came back it didn’t want mean yours will. ❤️

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Profile picture for lawhoeburg @lawhoeburg

@teacher22 I have been on Letrozole for 7 months and I also have dry eyes. I have not seen that dry eyes are a side effect but the coincidence is great. Nice to know you have the same issues!

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Profile picture for lawhoeburg @lawhoeburg

@teacher22 I have been on Letrozole for 7 months and I also have dry eyes. I have not seen that dry eyes are a side effect but the coincidence is great. Nice to know you have the same issues!

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@lawhoeburg

Dry eyes can be a side effect of aromatase inhibitors. Yerbba breast cancer did a short video about it. My ophthalmologist told me that lack of estrogen does dry out eyes, too. We're not imagining this. Keep those wetting eye drops handy!

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Profile picture for lawhoeburg @lawhoeburg

@briarrose I would suggest getting a dexa scan to use as a baseline for your bone density. I have osteopenia and am concerned about the bone loss potential side effects from Letrozole.

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@lawhoeburg Yes, thank you. I did already this past September. Unfortunately I have osteopenia in my left hip and this was 4 months on Anastrozole.
2 years ago my scan was completely normal.
Now, the question is, this change in my scan - due to the Anastrozole?
Or the result of simply aging? I am now 70.
My breast oncologist believes it is the result of aging, she said just 4 months on the AI would not cause osteopenia so soon. Again, who knows?

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Profile picture for songfamily2025 @songfamily2025

Good recommendation. I will show to my doctor the " PREDICT" results and to see what is her opinion. Thank you so much.

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@songfamily2025 Please let us know what your doctor says!

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Profile picture for briarrose @briarrose

@mj65
So very happy to hear it's been 25 years free of your lymphoma!! Blessings!!
I haven't started a support group either but plan to.
I will start my Letrozole this Tuesday. Will keep you posted and you do as well once you start it. I know it took about 2 to 3 months before any S/E's kicked in with the Anastrozole...wonder if it will be the same with Letrozole.
The very best of luck to you!

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@briarrose
Thank you

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Profile picture for Chris, Volunteer Mentor @auntieoakley

@mj65 sadly there is some cases that return even after we take every possible treatment or prevention. Even in those of us who lived a very “healthy” lifestyle.
I was given letrozole for a short time but it was contraindicated with another medicine I was taking, so it was back to anastrazole for me.
For some of us, it is a benefit to know that we did everything we could to prevent it. I never have to look back and wonder if it came back because I refused a treatment.
The great news here is, there is so many tools in the box to treat us. If one tool doesn’t work for you, then maybe there is a better tool out there, or another one on the way.
I would never refuse a medication based on someone else’s side effects. What have you got to lose by trying it?
You might not have any problem, if you do, are you comfortable asking your doctor for a change in medication?

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@auntieoakley
Yes I would be comfortable in asking my Dr about my medicine. Thats what Ive done so far, everything so I know I did all I could to prevent a recurrence.
Thank you

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@mj65
Thank you and I will keep you posted.

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For mj65: My experience is very similar and was in 2022. I have been on letrozole for almost three years. I have been doing ok with it until lately when I have been very fatigued, moody and generally feeling wornout. I can't blame it all on the meds, but somehow we have to keep moving forward with weight bearing exercise to keep bone strength, do what we can to improve sleep, protect our heart with exercise and appropriate food. I tend to wait too long to report issues, but that is not helpful, so talk to you doctor about concerns. If you have someone to assist with supportive supplementation beyond your doctor's recommendations, you might benefit. I have a chiropractor helping me with mitochondrial support. The hardest part is probably emotional and mental and keeping connected to friends and family for support is important, too. There are calculations and percentages about taking or not taking hormonal therapy and recurrence of bc, but there is no way to be sure what will happen. Couldn't that be said of just about everything? Why don't we do what we can to be healthy and enjoy each day as much as we possibly can? I am still learning and researching, but trying not to worry or overcomplicate creating a healthful lifestyle (a lifelong pursuit). I think finding a way to be happy, enjoying our friends and family and having fun, calming ourselves and seeing ourselves as strong and healthy might really help. All the best and God Bless!

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