Letrozole side effects? stage 1A

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Androniki
Androniki Member Posts: 6 Member

Hi - I'm new to the board and this is my first post. Was diagnosed with stage 1A, grade 2 endometrial cancer earlier this year. Had full laparoscopic hysterectomy early August (overall healing ok) - no spread, lymph nodes clean - but positive pelvic wash. Surgeon and hematologist have put out the option of taking letrozole (1-2 years) vs. just monitoring and periodic scans but they don't seem to be able to provide anything definitive in terms of it providing a large benefit. Will need to have blood work and bone density scan prior to starting. Leaning towards going this route vs. waiting and seeing and then wishing I had taken it. I'm post menopausal and there is a history of breast cancer in my family. Anybody have any recent experience with this? What sort of side effects did you experience? Thank you for any feedback.

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  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,444 Member
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    Androniki, interesting question for us all. I am hoping some of the other ladies can chime in with their knowledge, but I want to say how disappointed I am to hear that neither doctor was able to provide any specific insight on taking letrozole. It is a hormonal treatment so did they test you for being ER/PR Positive?

    I don't know what reading you have done on it, and I say that as it shows benefits in the ovarian and breast cancer arena, which is great, and there was at least one clinical trial done on endometrial cancer https://clinicaltrials.gov/ct2/show/NCT00997373

    Leaving decisions with patients without providing them information is unfair. I would suggest asking for more information. Taking something to take it isn't for me, but maybe you can ask for a second opinion on treatment.

    Sorry, I wish I could be more help, but as I said I hope the other wonderful women and their families come along chime in.

  • Androniki
    Androniki Member Posts: 6 Member
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    Hi - I appreciate the quick response and link to the study. Also for the question to ask about ER/PR results - this is very new to me and knowing what questions to ask is very helpful. I've seen references to breast and ovarian cancer, just not a whole lot referencing endometrial stage I. I'm not looking to take something just to take it . I know there are no guarantees but I want to do what I can to avoid having a recurrence and then wondering if I should have done something different. I have some time to decide a path and will be conferring with other members of my care team as well as continuing my research. Will look to hear from some others, even if it is just about the side effects. Hope you are well...

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,444 Member
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    YES! I completely hear you on wanting to do everything you can to avoid a recurrence AND "should I have done something different". It all makes sense - you are not alone.

  • Forherself
    Forherself Member Posts: 999 Member
    edited September 2022 #5
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    Androniki, welcome. One of the surprises for me was the unknowns. About this disease and treatment. I have read articles that say positive pelvic washings doesn't change stage. BUT I have not seen any articles talking about recurrence rates for the same stage with and without positive pelvic washings. So I think that would be a good question. Are there any studies about positive pelvic washings and recurrence? Another question I would have is about the genetic testing on your tumor. Did they do it? Are you P53 positive? Your age has an effect on your risk of recurrence and survival. I don't know about Letrozole. But I would think these questions would help you make your decision. I was given the choice for no treatment at all. I asked my doctor what she would do if she were sitting in my chair. She said I don't think I would have treatment. That is a good way to find out what your doctor thinks. Ask if their mother was sitting in your chair what would they advise. I ended up choosing no treatment. That was 4 years ago. But that is only an option when there is no cancer in the hysterectomy specimen for my type of cancer, serous.

  • Fridays Child
    Fridays Child Member Posts: 278 Member
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    Hi, Androniki. After completing chemo for my recurrence back in 2018, I took letrozole for about a year. It was explained to me (I was both ER and PR positive) that it would work to reduce the estrogen in my body so the cancer would not have it to feed on.

    In terms of side effects, I had some joint pain and some general malaise. After about a year they switched me to Megace. Pluses and minuses for each, but I remain stable so I'll take it.

    Good luck with your decisions and treatment.

  • jan9wils
    jan9wils Member Posts: 202 Member
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    I took letrozole for several months after other treatments failed. My side effects were leg pain, worse at night, and depression that got worse the longer I took it. Once I stopped taking it those symptoms went away. I have been prescribed other hormone blockers as well and could not tolerate them for the same reasons. Leg and joint pain is a more common side effect, depression is not.

    To reiterate No Time For Cancer, if your tumor is not ER positive there is no reason to take it.

  • Androniki
    Androniki Member Posts: 6 Member
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    thank you for taking the time to respond to me...I don't know about genetic testing - had not seen that item being raised before in other readings. I will be speaking with my doctors in the next week or so.

  • Androniki
    Androniki Member Posts: 6 Member
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    To all that provided responses and feed back -- Thank you! After consulting with some of my key doctors, cardiologist, hematologist, primary care, and breast oncologist (I see her due to family history of breast cancer), and confirming my tumor was ER positive, I decided to move forward and just started taking the Letrozole (2.5 mg). Projected course of treatment, assuming no major side effects, is 1 -2 years. I'm going for a bone density baseline scan this week and will be monitored on an on-going basis by both the hematologist and surgeon that performed my hysterectomy. My decision was made after weighing the side effects vs potential benefits (and doctor input). I will post periodic updates to let others know how things are going.

  • Forherself
    Forherself Member Posts: 999 Member
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    Thank you for your update. It sounds like you have reached your decision based on expert advice. It takes awhile to organize all the different players, and your priorities. Congratulations! You did it. We love updates.

  • Androniki
    Androniki Member Posts: 6 Member
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    SURGERY/LETROZOLE UPDATE: It's been 6 months since my diagnosis/hysterectomy and thought I'd post an update in the event it might help somebody. (cancer details are in earlier post) To give some personal background - I just turned 60, am quite over-weight and have controlled high blood pressure. There is also a history of heart issues and breast cancer in my family. I had pulmonary embolisms about 5 years ago - reason unknown and am taking low dose Xarelto as a precaution.

    I had what I feel is a fairly easy recovery based on what I've read online. Took a few months to get my energy back and even longer for internal scar tissue to not feel so hard (was difficult to wear anything other than yoga/sweat pants). I think what helped is that I walked about 30 minutes every day and was doing some basic stretching exercise prior to the surgery - and also followed instructions and walked immediately after (first weeks were just up and down the block but I built up to my normal distance so important not to get discouraged). I also had weight gain immediately after the surgery and that took about two months before it started to go down (this was very disheartening). I'm now taking an 8 week tai chi class and started doing online zumba to help firm up.

    As previously reported, after consulting with my doctors, I started Letrozole in mid October. Had a bone density test about a week in. Overall I'm tolerating the medication well but did have some side effect ( I can't say with absolute certainty that it was the cause but they started soon after). The most severe started within the first week or so - I had an increase in night sweats (almost every night) accompanied by heart palpitations (could 'sense' my heart beating') and some spikes in heart rate. I am staying in contact with my cardiologist and after seeing results of a heart monitor I was diagnosed with atrial tachycardia. He put me on a low dose of metoprolol and this seems to have resolved the palpitations (at certainly dramatically decreased them). He ordered a scan of my legs a month after starting letrozole to check for any blood clots (all clear). I'll be seeing him again in another two months. The night sweats have also leveled off to maybe once a week. About 3 months in I started to feel some twinges in my hip - fairly minor (the tai chi class helps with stretching). I have not experienced the severe joint pain that others report.

    I just had my 6 month CT scan and all looks good - except I have a small hiatal hernia (may be contributing to and increase in reflux/heartburn). I'm seeing a hematologist every 3 months for monitoring and blood work. She is also adding an annual chest xray. Current plan is to continue scans and 3 month monitoring, as well as taking letrozole, through year 2. I see the surgeon next month and later this year will go back to my regular gynecologist.

    Hope all reading this are doing well....

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,444 Member
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    Androniki, thank you for checking in and letting us all know how you are doing. You do have a lot going on but it is sounding like you are being monitored and you inspire me to get my butt moving to better myself.

  • ConnieSW
    ConnieSW Member Posts: 1,688 Member
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    Thank you for the update. Here’s to all continuing to go well. I tried tai chi class once and enjoyed it but had trouble remembering all the steps. Maybe I’ll give it a go again.

  • Momschooling
    Momschooling Member Posts: 112 Member
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    Hi, I was wondering if you had hair loss and weight gain with letrozole? I am also supposed to take it for a couple years and so far, have been too scared to dive in and start.

  • Androniki
    Androniki Member Posts: 6 Member
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    I certainly had some concerns about starting but my deciding factor was feedback from my doctors and discussion with loved ones. I've been on Letrozole about 7 months and believe I've seen some hair thinning (more hair in the brush and drain) but nothing major and not noticeable to others. I've struggled with weight all my life and find it is harder to keep it off, but I don't believe letrozole is the only factor (ie, diet, age, activity level). Best wishes with whatever treatment option you decide. Feel free to reach out with any questions.

  • Momschooling
    Momschooling Member Posts: 112 Member
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    Thank you so much :) I have now taken 2 doses, hoping it goes well and side effects are minimal. I really don't want a recurrence, so I have to give this a try. I did cold capping with chemo and lost about 40 percent of my hair with an almost a lot of thinning on my crown. I just didn't want the letrozole to get rid of what I had saved lol and reverse the new growth. I am already overweight as well and walking is about all I can do right now, with the neuropathy in one leg even that can be a challenge beyond a certain point. I went through surgical menopause with my surgery in January, so far just hot flashes but I hear letrozole makes it much stronger.

  • bav
    bav Member Posts: 12 Member
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    Thanks for the messages and follow ups on this topic -- it is helpful to see how treatment plans change over time. I was staged at 1b, ER+, had hysterectomy and then recurrence with radiation about a year after diagnosis. I've been on Letrozole for a few weeks now. No bone scan, and no discussion about how long I might be on it, but I'll ask about these things next time. I have not noticed any particular side effects - perhaps depression but that may be because I am still adjusting to my post-radiation reality (discharge, dilator) and fears of long effects. I am particularly watchful for effects of the letrozole on my lipedema, which tends to be exacerbated by hormonal shifts. Doctor also recommended a genetics test due to family history. Nervous about that but had the blood draw today. Wishing everyone strength, good days, and of course, health.

  • Momschooling
    Momschooling Member Posts: 112 Member
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    My oncologist ordered a dexa scan as a baseline and said she would like me to stay on it a couple years. I guess it will depend on how I feel with side effects and if I get a recurrence. I think there are a few other options with similar meds if this one doesn't work out. I am also worried about swelling, ever since my second surgery my legs seem larger around my ankles, especially on one leg.

  • bav
    bav Member Posts: 12 Member
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    Sorry for the delayed response: you may be able to book an appointment with a PT to discuss the leg swelling, ideally a PT who is knowledgeable about cancer care, and someone who can discern between lymphedema, lipodema, and lipo-lymphedema! There is plenty to do to manage swelling, but a diagnosis is key.

  • Momschooling
    Momschooling Member Posts: 112 Member
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    Thank you :)I will probably do that at some point. It seems to be stable currently, however I need therapy anyways for the nerve damage that happened during surgery, and I can ask them about why my legs look a little different compared to before.

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,444 Member
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    Momschooling, please get the leg checked out soon. Another side effect not alway discussed with patients is the possibility of lymphedma and that is can occur at anytime, weeks, months, years. You know your body and if it doesn't seem right it is worth asking about.