Anyone stopping AI after 7 years?

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GrandmaV
GrandmaV Member Posts: 1,267
edited March 2019 in Hormonal Therapy - Before, During, and After

Hi everyone, I will be at my 7 year mark on AI on April 1. I've found an article on this site about a study that said 7 years as good as 10. MO made a face when I mentioned it to him. Then he referred back to my Breast Cancer Index Test that said High likelihood of benefit for another 5 years. It's very confusing. My side effects are debilitating at this point. MO put me on a month long break last November and then switched me to a different AI. I'm worse than ever. I want to stay on for 3 more years, but I really feel I will be wheel chair bound by then. I had a bone density test recently and will get the results when I see MO in April. I've also developed another incurable health problem, pulmonary hypertension, I feel was, if not caused by AI, then certainly made worse by it. I really do not know what to do at this point.

Edited to add this link: https://www.breastcancer.org/research-news/5-more-years-of-ais-no-better-than-2-more

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  • Meow13
    Meow13 Member Posts: 4,859
    edited March 2019

    I stopped at 4 years, my oncologist didn't recommend a BCI test.

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  • Meow13
    Meow13 Member Posts: 4,859
    edited March 2019

    I stopped at 4 years, my oncologist didn't recommend a BCI test. I feel so much better now almost at year 8!

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  • Gudrun
    Gudrun Member Posts: 140
    edited March 2019

    Hi grandma,

    my dx in 2013, ILC, 1.7cm, node negative, bmx, no chemo, no rads, taking Letrozole, no recurrence so far.

    My oncologist, one of the few leading BC scientists in Germany told me there was no further benefit for me if I take the AI more than 7 years.

    I can only refer to my situaton, of course.

    G

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  • Gudrun
    Gudrun Member Posts: 140
    edited March 2019

    forgot to add I was ER highly pos whereas PR neg.

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  • Lezza13
    Lezza13 Member Posts: 957
    edited March 2019

    It will be seven years this July. Going to ask if I can stop Tamoxifen. Thanks for this thread!

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  • GrandmaV
    GrandmaV Member Posts: 1,267
    edited March 2019

    Meow, Gudrun and Lezza, Thank you for your input.  It's a very hard decision.  I came across a research study that suggest the lack of estrogen can make pulmonary hypertension worse.  I see my cardiologist next month and will ask about this.  I seem to be caught between a rock and a hard place.  I have been with my oncologist since 2011, but am now thinking about getting a second opinion on this subject.  I appreciate hearing about your experiences and what Leeza's  oncologist said. Thank you.  I was feeling very alone in this.

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  • redlessi
    redlessi Member Posts: 27
    edited March 2019

    My MO said I can stop now after 5 years. Its an emotional rollercoaster because I considered myself protected as long as I was taking something to keep a recurrence at bay. The reality is that is so not true. As I venture into this new stage, I look forward to living without the evil side effects of Tamoxifen.

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  • GrandmaV
    GrandmaV Member Posts: 1,267
    edited March 2019

    redlessi, Thank you.  We do tend to think we're protected on estrogen blockers, when the truth is they lower the risk of recurrence.  I didn't have a recurrence, but developed a new primary in other breast also ER+, in my 5th year of letrozole.  MO said since it was so tiny 4mm, I didn't need any more treatment for that one because I had BMX.  I'm on ai for the original tumor in 2011.

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  • GrandmaV
    GrandmaV Member Posts: 1,267
    edited March 2019

    Anyone stopping after 7 years?

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