What happens after hormonal tx? There goes my safety blanket:(

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  • JBeans
    JBeans Member Posts: 388
    edited December 2015

    Thanks for posting information Ruthbru and Katcar It is interesting to read up on this. I feel like tamoxifen and exercise are all I've got to hopefully keep me "safe" and I hope they really are working.

    JudiH - Mulmur! I have a friend who lives there. Small world. :-) I wish you and everyone the best.


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  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2015

    Try the BCI test, it will give you the benefit of continuing the AIs.

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  • JudiH
    JudiH Member Posts: 1,184
    edited December 2015

    Aug242007, I'm ignorant ... what is the BCI test? JBeans, I live in the Devonleigh Estates .... where does your friend live?

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  • Dee2010
    Dee2010 Member Posts: 80
    edited December 2015

    I'm so happy to have found this discussion and all of your input. You're amazing!

    I'm just starting Femera after five years on Tamoxifin and Arimidex (issues with first, and less with second). I'm hoping I won't have any problems with the Femera, but the onco said he had a couple of other of options if I do. He said it would reduce the chance of recurrence by 15% for me.

    I have a rather convoluted relationship with cancer. Most of the women in my family have had it, and some men. I've had three primary cancers (no mets) -- thyroid (2006), inflammatory breast cancer (2010) and pre-cancerous growth in the uterus, so that came out in 2014.

    I am struggling with the balance of prevention vs quality of life, as my weight more than doubled with the thyca, I have deterioration in the lower back and difficulty doing anything - even walking. I have recently been put back on sick leave because my manager has noticed issues with my concentration, memory and patience since I returned to work after the hysterectomy.

    I guess bottom line is I would like to see any references to research re: hormonal therapy beyond the five years, or experiences others in a similar situation may have had.

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  • JBeans
    JBeans Member Posts: 388
    edited December 2015

    Woah Dee, you've been through a lot.

    The only further option presented to me was ovary shut down or removal and I imagine it will likely in just less than 5 years. Perhaps there will be more published data about extended tamoxifen use by then.

    JudiH - my friend lives off county Rd 21 west of airport road. The Mulmur hills are just gorgeous - you must feel so blessed to just look out your door every day.

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  • JudiH
    JudiH Member Posts: 1,184
    edited December 2015

    Dee, you have been through a lot. Interesting if we see research for hormonal therapy after 5 years. I see my oncologist in February and she is an "expert in Femara" so I'll keep everyone posted. JBeans, your friend lives down the road from me (her road is the road I take to the county offices). Yes, it is beautiful to see but remember, this is snow country so winters can be brutal. But I'm blessed I moved out of the city to the country. My mom's family is from Dundalk so it's not far away!

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  • ruthbru
    ruthbru Member Posts: 57,235
    edited December 2015

    This was posted on the BCO research page Tuesday, December 8, 2015 6:30 PM. It sounds like it will be very interesting and helpful information.

    The San Antonio Breast Cancer Symposium will have a discussion of continuing the AIs and at what cost.

    "Over the past several years, new data has emerged which shows the added benefit of more aggressive endocrine therapy for both pre- and post- menopausal women. With increasing use of ovarian suppression in pre-menopausal women and extended adjuvant endocrine therapy across the board, we are seeing subsequent increased toxicity. While these more intensive treatments do offer benefit in certain high-risk populations, they can also significantly decrease quality of life for many women. This talk will discuss how to carefully weigh the risks and benefits of an increasingly aggressive endocrine therapy approach for each patient. We will also discuss how to tailor treatment options to the individual patient and her cancer."

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  • coraleliz
    coraleliz Member Posts: 1,523
    edited December 2015

    Hi Ruthbru. Thanks for giving me the heads up on this.. I've got less than a year to get to the 5 year mark.

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  • Angel123
    Angel123 Member Posts: 62
    edited December 2015

    I have a year and one month to go on Tamoxifen. My oncologist said I should only be on it for 5 years because of my diagnosis. On one hand I willbe thrilled to be off it but then I question whether or not it should be 10 years. Ugh!

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  • Tresjoli2
    Tresjoli2 Member Posts: 868
    edited December 2015

    I just started, but my onc has already told me tamoxifen for ten years

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  • JudiH
    JudiH Member Posts: 1,184
    edited December 2015

    Interesting Tresjoli! What this your oncologist saying to use the drug 10 years. Trust me, if it is to prevent "C" from coming back then I'm in!

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  • Lee7
    Lee7 Member Posts: 657
    edited December 2015

    Thanks Ruthbru for the info on San Antonio!

    I'm three months away from my 5 years on Arimidex, and soon to see my MO. I am pretty sure she'll be saying yes to staying on it, but I have had significant bone loss and that worries me. I am encouraged when I hear the phrases like ...tailor treatment to the individual and their cancer .

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  • ruthbru
    ruthbru Member Posts: 57,235
    edited December 2015

    I am so interested to see what they have to say because one size should not fit all as far as recommendations go. I was really glad to be done after 5 years & it would take some pretty heavy research pluses to convinve me to go back on.

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  • JudiH
    JudiH Member Posts: 1,184
    edited March 2016

    Hi ladies! Just popping in to let you know that my oncologist took me off of the meds. She stated that it was her recommendation because I was LOW RISK due to the size of my tumour, grade, etc. The likelihood of my cancer was low risk but nothing in life is 100%. My oncologist is an expert in Femara and stated that regardless of studies, if she felt that the benefits of taking the drug for another year, two or five far outweighed the side-effects, then I would be on the drug whether it be tami or another AL. She also stated that women in my age group (60+) usually go on to develop other illnesses such as heart disease, diabetes and the risk of dying of cancer was low!

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  • Daninayd
    Daninayd Member Posts: 58
    edited March 2016

    I had a genetic test done to determine if I would benefit from taking hormonal therapy beyond the 5 years. My results were that taking it longer would not benefit me. My onco said that I should stop taking it in 2 years.

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  • ruthbru
    ruthbru Member Posts: 57,235
    edited March 2016

    Good and good. I think that should be the recommendation for most (but, of course, not all women).

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  • JudiH
    JudiH Member Posts: 1,184
    edited March 2016

    Also, I forgot to mention that my oncologist said that the drug residual would last in my body anywhere from 8 to 15 years so that I had protection. Interesting and now more interesting re the genetic test and the oncologist recommendation to discontinue taking the drug after 2 years. Maybe the oncologists need to be on board!

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  • libby2002
    libby2002 Member Posts: 41
    edited May 2019

    hey Naomi-

    It's been a few years since you posted this.

    How long did you end up staying on the hormonal therapy for and did your cancer recur after you stopped?

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