Letrozole - is it worth the side effects?

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heidirgorecki
heidirgorecki Member Posts: 15
edited August 2020 in Hormonal Therapy - Before, During, and After

I have finished current Breast Cancer treatment with TCHP for 4 months last year, Herceptin for 12 months and bilateral mastectomy with reconstruction. I was HER2+ and PR+ at 18% but ER Negative. I'm going to be having a full hysterectomy in August but my oncologist wants me to consider an AI - Letrozole for the possible benefits of reducing recurrence. I obviously won't need Lupron because of the hysterectomy but he warned me the side effects are often not the most pleasant often so he's leaving it up to me.

Could any of you give me your experiences with it? Whether it was bad and what the worst side effects were? Or especially long term issues like bone loss.

Thank you!

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  • BCat40
    BCat40 Member Posts: 241
    edited June 2020

    I don't understand why the MO would recommend an AI if you were ER- and only 18% PR+. The AI is to "mop up" circulating estrogen. Did he explain that? I think you should get a second opinion.

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  • heidirgorecki
    heidirgorecki Member Posts: 15
    edited June 2020

    Yeah he said it was because of the potential effect of estrogen even tho I wasn't positive. It apparently has some proven effectiveness with PR, although I'm not sure how much. I'm still working on that research before I make a decision

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  • akmom
    akmom Member Posts: 272
    edited June 2020

    Heidi, there is a thread on this forum called Doing Well on Aromatase Inhibitors. Many people (including me) have minimal or no side effects on Letrozole. This thread might be be reassuring, or at least answer questions you may have about side effects

    https://community.breastcancer.org/forum/78/topics/854403?page=1

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  • heidirgorecki
    heidirgorecki Member Posts: 15
    edited June 2020

    thank you so much, I will check it out

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  • LimnoGal
    LimnoGal Member Posts: 157
    edited June 2020

    Heidi- my ER was low (35%) and my PR was negative. My MO suggested that I try letrozole. I took it for 3 years with minimal, mostly tolerable side effects. Between 3 and 3.5 years, I started having more activity limiting side effects. After an MO approved 2 month vacation From letrozole (where my side effects improved significantly), I tried letrozole again, then exemestane. Both caused the side effects to return. I am currently on a trial run of tamoxifen, where the only real side effect is some whopping hot flashes (not a problem in winter, but summer in the Midwest??).

    I understand, and agree with, your questions about the benefit from taking an AI for low/no ER Individuals. There really isn’t much out there in terms of research to guide a decision. The best reason I have heard is that it may prevent a new tumor from developing.

    You can always give it a try, and stop if the side effects are too much. I honestly did ok for the first three years. This year has been more of a challenge. I’m not sure if there will be a 5 th year...

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  • heidirgorecki
    heidirgorecki Member Posts: 15
    edited June 2020

    thanks LimnoGal that is super helpful

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  • MomE
    MomE Member Posts: 2
    edited July 2020

    I took anastrozel for 1 year with many side effects. Doctor switched me to Letrozole but to be truly honest the side effects are just as bad. I suffer from joint pain in my hands and feet. I have had trigger fingers on both hands and onset of carpal tunnel syndrome on both hands.Cramping in my hands, feet and legs. I have hair loss, dry skin, raised cholesterol readings and my blood pressure has risen( I always had low normal BP). I will get a bone density test soon.

    Thankfully I am at the end of my regiment.

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  • sandylo
    sandylo Member Posts: 16
    edited August 2020

    i have just taken my last tablet yesterday after 10 years i call it poison! I was very active before the cancer diagnosis. I now have to use a walking stick as both hips need replacing and both knees will be next. I also have a trigger finger not slept for 10 years just the odd hour pain in all my joints struggle to get out of the chair after sitting for a while itching all over its been a nightmare. And my hair and nails are terrible and numerous teeth problems.



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  • heidirgorecki
    heidirgorecki Member Posts: 15
    edited August 2020

    Wow, sounds like it's almost as bad as tamoxifen... i have decided not to take it. WIthout my cancer being estrogen related, it feels like taking an antibiotic for the flu, and with the side effects being pretty major, I don't see the point. All of your feedback has been super helpful thank you!!

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  • Mavericksmom
    Mavericksmom Member Posts: 635
    edited August 2020

    heidirgorecki , I am confused. You had an estrogen neg. tumor, so why would your MO recommend an AI?

    I took Letrozole for 6 months. I stopped taking it due to it raising my cholesterol significantly and I was starting to get joint pain. I NEVER wanted to take it and firmly believe it is over prescribed. I do not feel in post menopausal women, it is a good idea to limit estrogen except for some women where the benefit clearly outweighs the harm. Of course each person is different and we need to listen to what our doctor recommends, do our homework, then apply what we learned to our own bodies. It is also up to each of us to decide how much risk one way or the other, we are willing to take.

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  • heidirgorecki
    heidirgorecki Member Posts: 15
    edited August 2020

    @mavericksmom - That was my concern as well so when I asked him about it, what it came down to is there just really isn't any treatment for PR breast cancer, so they do this just in case, since so often it's ER positive in most women and it could potentially be in the future. Apparently I'm in the 1.5% rate occurrence with Hormone positive but only HER2/PR+ breast cancers so know one knows what to do. Figures.

    So that's why after doing every bit of research I could, I opted out. I just don't see the point at putting my bones at risk and going thru the side effects when nothing definitive is saying that's a problem. I am having a hysterectomy but more for the sake of worrying about cancer showing up in my uterus or ovaries at the rate I'm going with 2 cancers now.

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  • shirleyg1
    shirleyg1 Member Posts: 3
    edited August 2020

    I am also considering stopping because of all the side effects. What is the percentage of

    Survival without taking letrozole or tamoxifen


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  • heidirgorecki
    heidirgorecki Member Posts: 15
    edited August 2020

    @shirleyg1 - It was awhile ago I did all my research so I don't remember exactly, but it honestly had a lot to do with the type of cancer you had and the percentages of hormones from what I saw. For mine, being only HER2/PR+ it didn't make any statistical benefit, but actually in some cases seemed to make things worse. In some cases, it converted other hormonal factors into mimicking progesterone if you had certain genetic makeup which is obviously bad in my case. I would think that if you had them constantly monitor your levels it may give you a reason enough to consider stopping it, at least for an evaluation period.

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