AI after 10 years

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luckypenny
luckypenny Member Posts: 150
edited March 2021 in Hormonal Therapy - Before, During, and After

I am coming up on my 10 th year after diagnosis and making decisions with my Dr about continuing with anastrozole. I was er+ Only slightly pr+ , her 2- , 9 cm tumor with 8 positive lymph nodes did the standard treatment of a-c-t , radiation and 2 years of zometa Got hysterectomy as I was 41 at diagnosis and have been on ai the whole time


Dr says he isn't totally opposed to continuing AI after year 10 but the risks for heart and bone issues are concerning Dug into some research today regarding late recurrence on er+ folks and it scares the sh** out of me Thinking of continuing AI but adding closer monitoring of bones and heart by the way- I am 51 now

any one taking the AI after 10 years ? Can anyone share experiences with taking and having issues or not taking and have late recurrences?

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  • cubsfan
    cubsfan Member Posts: 49
    edited February 2021

    lucky penny I know exactly how you feel. My onc did not me to take AI after 10 years. I had bilateral er+or+ her2 negative w lymph involvement I had bilateral mastectomy w ACT and radiation. I took AI for 10 years and had significant joint pain but I felt it kept me alive. I was very hesitant to come off and even asked my primary to prescribe it so I could take it. I got off at 10.5 years. It will be 3 years this summer tgat I will b off it. My joints feel great. I have had a ton more energy. Lost weight and just feel better. I have not had reoccurrence and my numbers are beautiful. I feel good being off of it but I understand your hesitation. I am also BRCA1 positive I hope this helps you and you will make the right decision for yourself. Btw my onc said to me it could cause more problems staying on after 10 years

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  • luckypenny
    luckypenny Member Posts: 150
    edited February 2021

    thank you so much for this encouragement! I am so happy to hear that you feel better and it has been 3 years since you have been off the Medicine. My onc said the same as yours as far as causing more issues after 10 years

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  • DebAL
    DebAL Member Posts: 877
    edited February 2021

    just chiming in- my onc said same thing. Definitely no more than 10. maybe go past 5 if still doing OK and stop around 7. AI's are tolerable for me but I also have dreams of how good I may feel once I'm off. I still have several years to go

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  • luckypenny
    luckypenny Member Posts: 150
    edited March 2021

    it sure is scary to think of going off of them that’s for sure

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  • Jinx27
    Jinx27 Member Posts: 238
    edited March 2021

    Luckypenny I just came to congratulate you on reaching 10 years, Im so happy for you.

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