5 years vs 10 years on an aromatase inhibitor

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flaviarose
flaviarose Member Posts: 442
edited October 2018 in Hormonal Therapy - Before, During, and After

if there is already a discussion on this topic can someone please steer me in the right direction if this has already been discussed. I'm coming up on 5 years and at my last visit my Doc mentioned that I could think about going off them.... I told him that I had read that 10 years was better than 5 and that I was afraid to go off them. I do have a lot of issues, never clear exactly what is what.... joint pain... AIs or arthritis? Are they night sweats or hot flashes? Is the insomnia and thinning hair related? If I go off them, will he cancer come back. Anyone go off them and have the cancer return? Anyone have an alternative plan to keep estrogen at bay?

Thanks for your advice

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  • Meow13
    Meow13 Member Posts: 4,859
    edited October 2018

    I have been off about 2 years. No cancer yet.

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  • KCKCKT5
    KCKCKT5 Member Posts: 16
    edited October 2018

    How Mong were you on? Do you have any Chemo or Rads?


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  • Peregrinelady
    Peregrinelady Member Posts: 1,019
    edited October 2018
    I think the latest research is that 7 years is as beneficial as 10. Maybe this would be a compromise for you?
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  • flaviarose
    flaviarose Member Posts: 442
    edited October 2018

    7 years sounds more doable than 10, thanks

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  • healthystrong
    healthystrong Member Posts: 14
    edited October 2018

    Hello!  I was diagnosed stage one in Oct 2012. I started on tamoxifen and switched to anastrozole in 11/15 due to menopause. My main issue with the drugs is I have days when I am so very very down.  This is not all the time though. My onc told me that being on the AIS for ten years had no statistical effect on overall survival but statistical difference in recurrence.   I will try to research this......….This past April I marked five years on the combination and onc would support me going off b/c stage one and no lymph involvement.  However I was too scared to go off them. I have my appointment next week and I don't think I will be able to pull the trigger and go off of them.  I don't think I  will go off but I will ask about a drug holiday.  Good luck and keep posted.

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  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited October 2018

    https://www.medpagetoday.com/meetingcoverage/sabcs/69737




    Study: Two-Year Extension of Aromatase Inhibitors Is Long Enough

    No extra benefit from 5-year extension in breast cancer patients


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  • SpecialK
    SpecialK Member Posts: 16,486
    edited October 2018

    You might ask your MO whether the Breast Cancer Index test is appropriate for you. This is a genomic test on your original tumor material that is predictive and prognostic - meaning it predicts future risk of recurrence and also tells you whether anti-hormonal drugs are effective against your tumor - and it is specifically designed to be used at the 5 year point to help with the decision of whether to continue on. The result is quantified into a high/low numerical result for each aspect. I had this test done at the 5 year point.

    https://www.answersbeyond5.com/

    Also here is an older thread on the subject of 10 years on aromatase inhibitors:

    https://community.breastcancer.org/forum/78/topics/802153?page=52

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  • april1964
    april1964 Member Posts: 223
    edited October 2018

    I'm confused by my Breast Cancer Index test results ... it says 6.0% risk of 5-10 late distant recurrence and 11% risk of years 0-10 overall recurrence... those figures don't sound so bad to me though I admit that I'm not a math person. Question: why on earth do those low sounding percentages put me in the high risk category with high likelihood of benefit of extended Arimidex therapy? Thank you for your help.


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  • flaviarose
    flaviarose Member Posts: 442
    edited October 2018

    great information here, and more research to do. Thanks everyone

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  • pupmom
    pupmom Member Posts: 5,068
    edited October 2018

    I'm following my MO's recommendation, which is 10 years. Only 3 more to go!

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited October 2018

    april - what was your actual score? Here are report samples that show the cut-off between low and high on the graph, which is a combo of percentage of risk and score.

    https://www.breastcancerindex.com/files/testreports/bci_report_ann_HL2.pdf

    https://www.breastcancerindex.com/files/testreports/BCI-Annotated-Sample-Report-LNneg-FINAL-08.2018.pdf

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  • april1964
    april1964 Member Posts: 223
    edited October 2018

    specialK, thank you so much for responding to my post... it looks like my score is 6.1


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  • SpecialK
    SpecialK Member Posts: 16,486
    edited October 2018

    april - you're welcome! What was your result on likelihood of benefit for continued anti-hormonal drug therapy? A score of 6.1 is on the lower end of the possible high result, so that is a good thing.

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  • april1964
    april1964 Member Posts: 223
    edited October 2018

    It says high likelihood of benefit from extended endocrine therapy... is that what you mean? Thank you for helping me!!

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  • april1964
    april1964 Member Posts: 223
    edited October 2018

    there is a little graph at the bottom right hand side that says 16% absolute benefit with extended endocrine therapy ..

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited October 2018

    april - yes, that is what I meant. The BCI test has two parts - your risk of recurrence beyond 5 years is one part, and how effective the medication is for your specific genomic result from testing is the other part. Your high result for continuation benefit is great because it makes it clear that you should consider continuing beyond five years and it is a small percentage that gets that clear indication. Have you discussed your test results with your MO? Anyone who is considering continuing needs to discuss whether any side effects any benefit offered - both ones you may be experiencing currently, or may have in the future if you continue on anti-hormonals, and how these side effects may affect your overall health.

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  • april1964
    april1964 Member Posts: 223
    edited October 2018

    thank you so much, specialK, for your help. My MO is very nice but shy and hard to talk to... he called me up and said I was high risk and will need to stay on Arimidex... I was so shocked by the results that I stupidly said “okay, I will," and didn't ask him any questions... I don't know if the test works this way but am I on the low end of high risk? My lymph nodes were negative and tumor size was very small at only 1cm. did you have the test done?




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  • SpecialK
    SpecialK Member Posts: 16,486
    edited October 2018

    april - you're welcome! It appears to me that you are on the lower end of the spectrum for a high risk result, and also likely to benefit from continuing anti-hormonals. So, while at a slightly higher risk for recurrence you have a way to combat it with continued anti-hormonal therapy. I did have the test done in 2016, and unfortunately ended up with a high risk of recurrence - my score was quite a bit higher than yours - but the test showed thatI am not likely to benefit from continuing on the drugs. I had what is called a high/low result, happens to about 10% of those tested. My MO asked me to stay on the drugs anyway because low benefit doesn't mean no benefit.

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  • april1964
    april1964 Member Posts: 223
    edited October 2018

    Thank you so much SpecialK!!


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  • Jinx27
    Jinx27 Member Posts: 238
    edited October 2018

    Im 30 y/o and my doctor wants me to do arimidex daily plus lupron injections every month. Im in year two and have depression from time to time and its annoying I can't see doing this for 8 more years. I prob will stop to have children and then go back but I have to get a grip on the side effects, they are ruining my life.

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  • Meow13
    Meow13 Member Posts: 4,859
    edited October 2018

    Has your doctor talked about adding paxil? I took 20mg when I was also taking anastrozole. I think it helped with anxiety and the hot flashes.

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