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Chris51's avatar
Chris51
Member
3 years ago

How long on hormone blocker medication

I was diagnosed Oct 2018- had lumpectomy (clear perimeters & no nodal involvement). Followed up with radiation & Letrozole. Given bone density results my oncologist is keen to move me across to tamoxifen. She also mentioned that I would be coming off any hormone blocker at 5 year mark. I thought this medication usually continued for 10 years. Also some concerns re changing over to tamoxifen after 4 years of Letrozole with few side effects. I will discuss with my GP at next appointment but just wondering if this is similar to others experiences with treatments.

30 Replies

  • I know that my oncologist based his recommendations on a very large overseas study, which he considered to be very significant in its results. I wouldn’t have accepted a 100% extension if he didn’t have some compelling evidence and if I didn’t know he was well versed in current research. But he also acknowledged that there was no definitive evidence of incremental benefit in between 5 and 10 years. You pays your money and takes your choice! 
  • The recommendations suddenly went from 5 to 10 years - WTF ?
    Who really knows what and who do we trust ?
    I think they are all guessing and recommending the longest timelines to (1) save their own butts and/or (2) get the most from the chemical company prescription kickbacks !!!
    Yes, I am cynical.  Think about all the women who suffered side effects for years and still had the BC return ....

    PS  Those who have their medicos on a pedestal need not bother to respond !!!  🤣🤣🤣🤣
  • Yes, my onc intimated that recent studies suggest 5 as effective as 10 in situations like mine. I also am up to 4 at the end of this year when she is talking about moving me from Letrozole to tamoxifen. Not sure that I am completely happy because I feel swapping one set of possible side effects for another. I have tolerated Letrozole with little side effects apart from the decrease in my bone density. I wonder whether this would have happened anyway. I am pleased that she has brought up these issues so that at least I can speak to others with no great rush to make decisions. On one hand I am happy to be considered ‘beyond’ the immediate risk of recurrence but a little unsettled at the thought of coming off the hormone blockers. 
    Thank you to all for your input - it really is reassuring to hear from others.
  • @Sister
    That would be good to know - five years ago, when I raised the issue with my oncologist, he was not aware of any research (and he’s pretty up to date) that would indicate if the improved effectiveness is gradual (ie each additional year adds a degree of benefit) or whether there is a sudden accumulation of benefit after nine or so years. Would make a difference to those battling severe side effects to know an extra year or so after five is actually worth it. 
  • There's rumblings in the US ILC sphere that 7 years might be as effective as 10.  I'm only coming up to year 4 but plan to ask the onc when I see him next.
  • I have been on Letrozole for 5 years and have osteopenia which has stablised after 6 infusions of a bisphosphonate. My oncologist is planning 7 to 10 years depending upon my bone density. 
  • I have been on Tamoxifen for the past 5 years 
    Next week I have my rewiew with my oncologist 
    I wil be following her advice 
    Stork
  • Like @iserbrown, I was originally given 5 years for Letrozole, but my oncologist felt that research was convincing that 10 years was better. 10 months to go! However, given a proposed change and bone density results, she may be acting cautiously. It’s perfectly OK to quiz on this! 
  • I was originally told 5 years however my Oncologist has changed it to 10 years.   3 to go and counting!