Long Term Tamoxifen use

rozem
rozem Member Posts: 1,375
edited June 2017 in Hormonal Therapy - Before, During, and After

Hello

I know a lot of us are being advised to stay on hormone therapy for 10 years vs 5 ( this is individual based on risk/age and other factors)

I've been on Tam for just over 5 years...I have tried an AI 2x and couldn't tolerate it. If I stay on Tam for the next 5 years does anyone know if the risk factors (percentage) increase? ie higher percentage of uterine cancer/blood clots etc?

I know the ideal is to move to an AI but not sure I can

Would love to know the opinions of your docs on this matter


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Comments

  • besa
    besa Member Posts: 1,088
    edited March 2017

    http://www.sciencedirect.com/science/article/pii/S...


    "Long-term effects of continuing adjuvant tamoxifen to 10 years versus stopping at 5 years after diagnosis of oestrogen receptor-positive breast cancer: ATLAS, a randomised trial"

    Reference: "The Lancet", volume 81, issue 9869, 9-15 March 2013, pages 805-816

    Some good info on the topic in the full text of the above journal article. Hopefully the link above will get you to the free full text.

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  • rozem
    rozem Member Posts: 1,375
    edited March 2017

    Besa very interesting and answers all my questions thank you!

    looks like the risk of endometrial cancer is what doubles - still a low percentage tho

    that's how I read it - risk of stroke/PE etc stays the same ?

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  • besa
    besa Member Posts: 1,088
    edited March 2017

    See the bottom of table 2. I think risk of death with PE does not increase but the incidence (which includes hospitalization or death) of PE does increase. Stroke risk (hospitalization or death) or stroke death does not increase. Tell me what you think after looking at the data....

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited March 2017

    My onc is recommending that all her patients go for ten years. I'm having a hard time seeing that. The small child in me thinks "it's not fair, they said five at dx". I flunked Arimidex and Femara, so I'm on my last 371 days of Tamoxifen to get to five years. But who's counting. I asked for the BCI test, but my onc feels like since it is not standard of care, we can't rely on it. I did just have a hyster for post meno bleeding from a polyp, probably due to Tamoxifen. It feels good to take the issue of endometrial cancer off the table.

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  • ShariAnn2
    ShariAnn2 Member Posts: 4
    edited March 2017

    I have been on Tamoxifen for 8-1/2 years. I have had very little side effects,very blessed. I can't help but think of what changes my life/body will go through once I stop after 10-years. Too me it's like a insurance policy that I am going to hate giving up. Thoughts?

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  • Falconer
    Falconer Member Posts: 1,192
    edited March 2017

    Hi ShariAnn, wondering- how old were you when you started Tam? Were you pre or post menopausal

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  • jennyfrombama
    jennyfrombama Member Posts: 63
    edited April 2017

    Meeting with my doc tomorrow to decide on further years. I'm at 5 1/2 with very little symptoms (that I can pinpoint). After several friends diagnosed with Stage IV pancreatic cancer at first visit, I have a new interest in continuing. If I can take a pill to lower my risk of further breast cancer, I think I should.

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  • ShariAnn2
    ShariAnn2 Member Posts: 4
    edited May 2017

    Hi Falconer, I was 42 years old...pre-menopause. Just trying to establish a good foundation for my health and prepare myself for when the Tamoxifen stops. Not sure if the Doctor will prescribe me a post-menopausal regiment or what. I have my 6-month follow-up next week. New Doctor so I'm sure we will go over my future goals.


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  • ShariAnn2
    ShariAnn2 Member Posts: 4
    edited May 2017

    I totally agree...hence the reason I wish I can continue on Tamoxifen until the end of time! No word on long-term studies past the 10-year mark. Sigh!

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  • Heidihill
    Heidihill Member Posts: 5,476
    edited May 2017

    ShariAnn, it is nice that the effect of Tamoxifen lasts into the next decade after taking it 10 years. I am also pondering this although from the perspective of metastatic disease. I was previously on AIs. I am on a low dose of Tamoxifen now, which has been relatively easy compared to the full dose AIs. Maybe that is something to consider for you? Lowering the dose instead of stopping it completely? There are people with mets who have been on either AIs or Tamoxifen or a combination for 20 years. This is now my 10th year.

    The other issue is that of drug holidays to combat treatment resistance. After 10 years it might be good to resensitize any BC cells to endocrine therapy. So a break might actually be what you need although there is no way to find out. Anyway it is a good topic to discuss with your new doctor. 

    Edited to add: Maybe also ask about taking baby aspirin during a break. 

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  • peggy_j
    peggy_j Member Posts: 1,700
    edited May 2017

    besa, thanks a lot for posting that article. I printed it out and will read later.

    FWIW, I was one of the pre-meno women who had bone loss while on tamox (MO says it's rare but my endocrinologist, the head of the UCSF osteoporosis clinic, says it may not be that unusual except most women don't get tested. Just an FYI that if anyone has concerns about bone health, get a DEXA scan every two years.). Now that I'm post-meno I'm (hopefully) getting the 2-for-1 benefits. And fingers crossed on the clots/PEs/etc.

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  • nmi
    nmi Member Posts: 180
    edited June 2017

    I have been on tomax for about 7 years. The SE have been minimal. It actually has reduced my headaches, which I noticed when I started taking it. I have always suffered from migraines effected by my hormones. When my MO told me I could stop taking tomax at the 5 year mark, I tried and felt awful! It was that premenstral feeling. It felt like every ounce of energy was drained out of my bodyand and major heaheadaches. MO told i could continue taking tomax. Part of me wants to be able to discontinue the medicine, but I don't want to feel awful!

    I did start taking it post menopausal

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  • Pi-Xi
    Pi-Xi Member Posts: 348
    edited June 2017

    nmi, thanks for sharing your experience. That's just not something you hear about tamoxifen every day.

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