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Alison_Z's avatar
Alison_Z
Member
2 years ago

Do I take Letrozole

Hi there. I am new to this group. I have had a Grade 2 cancer removed (lymph clear) and 3 weeks of radiotherapy. The tumour was 9mm Oe+ 100% Pr+ 90% and I now have been recommended to go on Letrozole. It is sitting on the bench and I am really nervous about it. I'm post menopausal and the bone density scans are showing osteopenia already. I'm really worried about all the side effects - weight gain, osteoporosis, joint pains etc.... Has anyone else been in the same boat or do you feel that because it is recommended by the oncologist, they are the ones that know best??? I believe he said it only increases the chances of not returning by about an extra 2% (i think from memory).... so is it really worth it? Happy to hear people's thoughts pls
  • Dear @alisonzagar

    I took Letrozole for ten years. In context, my bone density was excellent when I started and it was strongly recommended, first for five years but after four my oncologist was influenced by research that showed ten years would give a better outcome. My bone density has declined during that time - how much is Letrozole  and how much age (I was 67
    when I started on Letrozole) is pretty hard to tell. It is possible to have treatment such as Prolia to strengthen bone density but there are some side effects and implications if you go down that path. I’ve avoided that so far - my next bone density test may indicate whether there is any hiatus in the bone loss (I have been off Letrozole for nine months) or if I may need to consider other treatment. On the positive side I have never had any aches or joint pain, or weight gain. All I can recommend is give it a shot. You will know within a few months what side effects, if any, you have and can make a more informed decision then. As for the stats, it all depends which side of the ledger we are on, doesn’t it? And we don’t know that. I opted for doing all I could and I don’t regret it but it’s a really personal decision and you should weigh up all the factors particular to you. Best wishes whatever you decide, 
  • It is really up to you, whether you take it or not.
    Not everyone gets all of the side effects.
    You could try and see. The Oncologists'  advice sounds appropriate.
    There are also other drugs to try that are similar, should you need to change.
    I would double check the percentage of difference, taking or not taking the drug.
    My difference is 11%.  So I am continuing with it. (I'm on Exemestane)
    The other thing is you can start and see, you can stop later. But keep in touch with your Medical team.
    All the best, whichever you do.


  • Just try it and see. Give it a go. I didn't get any side effects from Letrozole. Do every thing you can to stop the cancer is my suggestion and follow the professionals advice.  I think every percentage increase in stopping the cancer is worth it.
  • I've been taking it for just over a year so far so good.
    Had 15 rounds of radiation and also bone scan showed osteopina before I started letrazole. 

    Good luck .
  • @alisonzagar did you take the plunge I’ve been on hormone blockers coming up for 7 years 
    There are no 100% guarantees in this or in life actually 
    like the others have said its up to you. 
    My percentages where high for  both er and pr as my oncologist put it my tumour thrived on it 
    i was osteopenia before cancer. Started menopause at 38 so high risk for osteoporosis. Got my follow up dexa in February. So far I’ve stayed osteopenia hope to keep that up even after taking the blockers. 
    My side effects were yuk in the start but settled down I tolerate them 
    best of luck whichever way you go. 
  • Thanks @Alison_Z I just started Letrozole today so I am very glad you asked the question and thank you to all for your generous and helpful responses. It helped to settle my niggling concerns :smile:
  • @alisonzagar did you take the plunge I’ve been on hormone blockers coming up for 7 years 
    There are no 100% guarantees in this or in life actually 
    like the others have said its up to you. 
    My percentages where high for  both er and pr as my oncologist put it my tumour thrived on it 
    i was osteopenia before cancer. Started menopause at 38 so high risk for osteoporosis. Got my follow up dexa in February. So far I’ve stayed osteopenia hope to keep that up even after taking the blockers. 
    My side effects were yuk in the start but settled down I tolerate them 
    best of luck whichever way you go. 
    I am about to start on the letrozole at the end of this week. Thanks for your input 🤞
  • Give it a go!  You won't know until you try.  Always remember that if Letrozole doesn't suit there may be another that agrees.

    I lastest four years on a combination of Arimidex and Letrozole, and that for me was the best my body could do. We sort of have to weigh up the benefits and assess overall risks as well.

    @Afraser is a good example of how successful the AIs can be.  

    I also understand the most benefit being on an AI can be in the first 2 to 3 years, or so I am told. 
  • @Alison_Z
    Did you start Letrozole?  I was on Letrozole for a couple of years and eventually back to Tamoxifen.   It's all a little daunting but the body does, in time, adjust. It's now 8 years plus, counting down to 10 years!

    As to the comment above, Dementia type symptoms.
    That comment is enough to scare anyone!  
    Dementia is complex.   I am a full time carer for a young sister with Dementia.   As we settle into reality there are many good moments.   Loss of ability to do everyday tasks!  Can't comprehend value of money.  The list is long.

    We've worked on physical and mental abilities.   A common test with the Geriatrician, spell the word, world, backwards.  Draw a clock.....


    There's no known family history.  History starts somewhere!

    A link to learn a little more about Dementia and all the sub types.  

    https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/dementia-early-signs
  • It is extremely worrying to experience temporary memory loss and my oncologist explained it was dementia type symptoms I was experiencing.  I discontinued taking the hormone blocker at that point (4 years on it).  Any side effects or changes should be reported as I was thinking I was at the start of dementia which of course turned out not to be.  

    It was very scary for me, and so I do tell others so they can be monitored and not necessarily think it is the start of dementia and get a false diagnosis for that!  

    I understand it can be a triggering topic, and for some it can be useful information.

    Many have very little side effects from taking an AI or tamoxifen, and that is great.

    @Alison_Z I didn't get weight gain, nor osteoporosis, but some worsening joint pain, and some temporary memory loss.  I managed four years on an AI and that was the best I could manage.  2% can make a difference and I don't regret taking the hormone therapy.  I was also post menopausal and now 7 years on from my diagnosis. Wishing you all the best.