Hormone therapy extended beyound 5 years for grade 1 stage 1 tumour

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I had a 7 mm grade 1 stage 1 tumour removed in Nov 2021 (heavily hormone positive, her2 negative), since then 20 sessions of rdiotherapy and tamoxifen for 5 years (I'm 47 years old).

I had a follow up appointment with my oncologist last week and he casually mentioned that after my 5 years on tamoxifen they would look at putting me on Aromatase Inhibitors for another 2 to 3 years.   

From the research I've done it seems my tumour wasn't that agressive, (8% KI-67) i can just about handle 5 years of Tamoxifen but like to think I'll be done with treatment then. It seems like a lot to have to continue, does anyone have any similar experience? is it normal to have extended endocrine treatment for a situation like mine?

Thank you all for reading, the support I've had on here has really helped me through the last year!

  • Hi  (think I am too!), I’m very interested in the extended hormone therapy as I’m coming up to 4 years of Anastrozole in December. My situation shares some bits of yours but mine was grade 2 and bigger (13mm). Also I was 59 when diagnosed. I don’t think I’m going to be offered treatment beyond 5 years because of my age but I’ve read that it’s advantageous so I’m going to discuss it when the time comes. Somewhere in the archives of my phone notes I’ve got a link to an article on this subject. I’ll try to find it and post it. From memory, it concluded that an extra 2-3 years reduced recurrence but I think an extra 5 was considered unnecessary. 
    In the end of course it’s your decision and I may feel differently when I get to 5 years. Also yours was considerably smaller and a lower grade. I don’t love the Anastrozole and I get various unpleasant side effects, the worst for me being fatigue and joint pains, but for me they’re manageable now that I’m retired. Not an option for lots of folk, I know. 
    I’m sure you’ll get more responses from others with cases that are closer to yours. And you’ve got time to research and make an informed choice when the time comes. 
    Love and hugs, HFxx 

    HappyFeet1 xx
    Don’t be afraid to cry. It will free your mind of sorrowful thoughts. – Hopi
  • Good to do your research and if you go to breastcancerindex.com you can find excellent data.  Since 95% of women do not benefit from anti estrogen treatment after 5 years there is a test that you can ask your Dr to order for you.  It is the breast cancer index test.  Your tumor was low grade and small and Ki 67 showed it was not aggressive.  
    This test will help you to decide.  Good luck.  I also had stage 1 small tumor Ki 67 5% and medical oncologist said anastrazole for 5 years if I can tolerate it but I am 73 years old so makes a difference.  
    I always say show me the data!!  Love to see women feeling empowered.

    Barbara

    Barbara 

  • That link from  was one of the ones I was thinking of! I’m not sure that test is available in the UK? Maybe it’s sent to the US as I I think is the case for an Oncotype test? I didn’t have that as I wasn’t being considered for chemo and I think oncotype is to inform that decision. 
    Here is the link from a post a while ago - it’s quite a long paper but useful I think. I skim over a lot of it but read the conclusions and summaries. 

    www.ncbi.nlm.nih.gov/.../

    HappyFeet1 xx
    Don’t be afraid to cry. It will free your mind of sorrowful thoughts. – Hopi
  • Thanks for the link.  It is a long one but will try and digest the important things.  Like you I will go to the conclusions snd summary.  

    Barbara