Thoughts on stopping Anastrozole after 10 years.

  • 13 replies
  • 315 subscribers
  • 1334 views

Hello everyone,

I was diagnosed and treated in 2015, and next year I will be stopping my anastrozole. 

As much as I am interested to see how I feel without them I do feel like they are a safety net. When I spoke to my oncologist she said some people request to stay on anastrozole past the 10 years, and even though there is little evidence of benefit they allow them too.

I don’t think I want to keep on taking them but I am interested to know how have people have felt when they have stopped both physically and emotionally.

Thanks!

Karen. 

  • Hi, an interesting post. I am on Anastrazole, and I was prescribed it for 10 years, or for as long as I can tolerate it, the oncologist said. So more than 10 years if I chose to. I am 3 years in, so am not where you are, but I have thought about how I would be feeling if I had been prescribed it for 5 years, as I would now be over half way through. I would be pretty nervous about it, if I am honest, but maybe that’s just me.

    Maybe there is little evidence of efficacy post ten years because perhaps there have been no longitudinal trials after ten years. It will be interesting if someone on here knows more about that. I believe (but could be wrong) that it is only in recent years that hormone treatment has been commonly  prescribed for ten years. I think that in the past it was more often prescribed for 5 or 7 years. 

    I hope others have come on with experiences of their own. X

  • Hi diagnosed 2016 on Anastrozole until early 2027 so a bit yet but already wondering if carrying on is an option. Interesting to see it may be a possibility as recurrence has always been my biggest fear though time has helped in dealing better with this. I know my cholesterol is high presumably linked with Anastrozole and a statin is being considered. Also bone density has been effected and I take Alendronic once a week. Not sure I would be advised therefore to continue but think I would if possible. Hope you get more responses as I'm very interested in other views . Suppose it's more pressing as the ten years approaches !

  •  .lovely to hear from you.

    I was on Letrozole for 10 years, decided to continue after that, but got so fed up with side effects I stopped. It took a while but ai feel much better.x

    Onwards and flatwards (don't do hills) and keep walking if you can!

  • Hi  , thanks for raising this. I’ve now been on Anastrozole for 5 and a half years. I was originally scheduled for 5 but asked to discuss extending it as I’d read stuff re carrying on for 7, with a reduced risk of recurrence. It’s my biggest fear, especially as it often seems only to be detected once it’s spread. The surgeon agreed to extend it up to 7 years as he’d read the same article. Also he’d agreed at my 4 year follow up to refer me for possible genetic testing due to my family history (previous doctors had dismissed it because I wasn’t triple negative). I got the tests and turns out I have a mutated ATM gene, less well known than BRCA and carrying a moderate risk rather than high, for developing breast cancer. Anyway it was another factor in extending Anastrozole. I will definitely be fearful when approaching the end of that. It’s a risk v benefit for me too as I already have osteopenia which has slightly worsened from my last dexa scan. 
    So will follow this thread with interest! Love and hugs, HFxx

    HappyFeet1 xx
    Don’t be afraid to cry. It will free your mind of sorrowful thoughts. – Hopi
  • I wasn’t on Anastrozole, but Letrozole for 3 years and Tamoxifen for 2, finished that in May 2023. Here we are in June 2024 and I’ve already had surgery for a recurrence, certainly facing radiotherapy which I didn’t have before, and possibly discussing targeted therapy or chemo, will know more on Thursday. 

    So I definitely feel I may have stopped too soon, however, I’m a firm believer in stress playing a part in all this, particularly long term stress. For me it was seeing my daughter through her long long illness with lymphoma, before the first incidence of my bc, then of course as many of you know, hubs died after a ten month awful illness with kidney cancer, in October 2021. So who knows? 

    Thinking of you all with your decisions, but looking towards the breaking news stories about early blood test detection and possible future mRNA preventative vaccines. Cancer research is getting exciting news at last.

    hugs xxx

    Moomy

  • I saw a friend today who was diagnosed a few years before me. She has finished her course of letrozole which was prescribed for 5 years. She didn’t ask to extend the course, but was pleased to come off it, and is moving forward, she says. Incidentally, she said that it took 4-5 months before she felt much better in respect to letrozole side effects. So that’s her experience of it. 

  • I was worried about my cholesterol too, I saw a post on here about benecol which I have been taking for about a year.  Was pleased to see my cholesterol was lower than my baseline at my annual review. 

  • My oncologist noted 10 yrs if tolerated.  I must admit feeling nervous about stopping them although I am only 20 months in.  I’ve not seen any stats beyond 10 years.  There must be data for 15 years?

  • Hi  just wondered how you take the Benecol. Is it the drink you use thanks.

  • Good luck on Thursday  xx

    Onwards and flatwards (don't do hills) and keep walking if you can!