Tamoxifen for 5 Years End 1/9/2014 and start again?

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Jo_Ann_K
Jo_Ann_K Member Posts: 277
edited June 2014 in DCIS (Ductal Carcinoma In Situ)

Hi Everyone!

It's been a while since I posted on this discussion board, but at my last oncology visit, the doctor and I had a good discussion about what happens after my 5 years on Tamoxifen ends on 1/9/2014.  First of all, for those newly diagnosed, the time goes so quickly.  I rarely think about the cancer anymore except when it comes up in conversation or I have a doctor or mammogram visit.

I have been fortunate enough not to have any major problems with the Tamoxifen, just the usual loss of estrogen symptoms. So the oncologist says new studies really support the continued use of Tamoxifen or another medication, I can't remember right now after the initial 5 years are completed.  She said, while we don't know who the 5% are who have invasive recurrence leading to death, if I am not having problems with Tamoxifen, it would benefit me to continue as the percentage of invasive recurrence and death is even lower for those on Tamoxifen. This is certainly contrary to original studies that said NOT to take it beyond 5 years as it has no effect on survival.

With my family history and negative BRCA status (geneticist says there is probably another genetic abberation not yet determined), that I should consider staying on the medication for another 5 years.  Has anyone else had this discussion with their oncologist?  Please share.

Warm Regards to All,

Jo Ann

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  • proudtospin
    proudtospin Member Posts: 5,972
    edited June 2013

    I have had the discussion with my MO regarding staying on my AL, she said I could stop at 5 years...and that was this past Spring, my end date is Dec 2013 and I am counting the weeks!

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  • coraleliz
    coraleliz Member Posts: 1,523
    edited June 2013

    I believe the study showing the benefit of 10 vs 5 years was done on IDC. So it may be different for DCIS. Something to consider. The benefit may be even smaller? I'm doing the 5 year countdown & my MO laughed when I told him I was 30% done with Tamoxifen. So he didn't bring it up......plus I have a ways to go

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  • Natters
    Natters Member Posts: 361
    edited June 2013

    Jo Ann - I am like you, tolerating the Tamox pretty well, and wondering if I can get more out of it. I printed out that study and brought a copy in with me to talk to my MO at my last visit. He laughed and said that he'd seen it a lot lately. And that, as coraleliz pointed out, the study only looked at women with IDC not DCIS.

    In other words, no studies have shown that an extra 5 years on Tamoxifen reduces the risk of recurrence or a new primary breast cancer in women with a history of DCIS.

    So my MO refuses to prescribe additional Tamoxifen past my initial 5 years, unless some study comes out on women with DCIS before then. I am thinking that you have a pretty bad family history for your MO to be so concerned about a recurrence in your case, because your pathology (based on your signature) doesn't seem so alarming and you had radiation therapy after your surgery. I don't know what I would do in your shoes, but I do know that I was thinking about taking it an extra 5 years myself, if my MO wanted me to consider that option.

    Good luck, and I look forward to hearing from other women with DCIS who had that talk with their MOs.

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  • proudtospin
    proudtospin Member Posts: 5,972
    edited June 2013

    Natters, gee, I am DCIS and feeling quite good to hear that the study was not about DCIS woman!  I feel I am struggling to get to the end of the year and the end of my 5 years so while docs did not say longer, it is good to hear she is not likely to surprise me!

    thanks really!

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  • Jo_Ann_K
    Jo_Ann_K Member Posts: 277
    edited June 2013

    Hi!

    My mom died from breast mets, and her mother (and her mother's sisters) all had female hormone cancers, from which they died. That's why they think there is some genetic abberation that hasn't been discovered yet, and the reason they advised a little more treatment than one might consider with my diagnosis. I had been having mammograms since age 35, when my Mom died, on the recommendation of her oncologist and my gynecologist, and the spot where they found the DCIS had been followed for a couple of years before it morphed into DCIS. So I feel blessed I followed the recommendations, and blessed that I had such a "minimal" diagnosis. 

    For my mom, she had IDC at age 55 and was "cured" before it returned 7 years later, and she died within 3 weeks of diagnosis.  She died on Mother's Day 1990.

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  • Annette47
    Annette47 Member Posts: 957
    edited June 2013

    Sorry to hear about your mom.

    I'm following this thread with interest, but as I've only been on Tamoxifen for 3 months, I'm nowhere near making that decision.   My MO hasn't ever mentioned how long he wants me on it - just said he'll write me a prescription for enough to get me through to my next appointment, LOL.

    He did say something about how I might go through menopause in the next 5 years (I'm 45 now) but I doubt it as my mother didn't until 55, so it might depend at least in part on that.   If I continue to tolerate it as well as I have, then I would have no problem staying on it longer ... 

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  • Jelson
    Jelson Member Posts: 1,535
    edited June 2013

    I just raised this very question with my MO this week at my 6 month appt. he does not recommend it as there has been no study indicating value to extending tamoxifen beyond 5 years for DCIS - but he said that could change tomorrow! While I have not had many unpleasant side effects from Tamoxifen, I have had two d&cs due to thickened edometrial lining. I look forward to not taking it - 18 months to go!!

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  • Jo_Ann_K
    Jo_Ann_K Member Posts: 277
    edited June 2013

    Jelson, I have had the thickened lining and biopsy, which was not too pleasant, but at least it can be monitored.  Annette47, when I was diagnosed I had not hit menopause, but within 3 months on the medication, my periods stopped. I was 53 at the time.

    I am glad to learn that this study was not focused on DCIS, even though my onc believed it was. I will definitely follow up on that.

    Regards,

    Jo Ann

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  • louishenry
    louishenry Member Posts: 417
    edited June 2013

    I also asked my Onc if I could stay on tamoxifen as it wasn't a problem for me after the first year. He said the studies did not include DCIS. Just IDC.



    No go for me. I felt vulnerable at first but I'm getting used to it.









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  • Jelson
    Jelson Member Posts: 1,535
    edited June 2013

    louishenry - thank you for the warning, I bet I will feel the same way - vulnerable - like after finishing radiation - adrift. glad you are getting used to it!

    Jo Ann K - exactly - the endometrial lining can be monitored, I take a baby aspirin to help prevent blood clots and go to an opthalmologist for my eye checks!

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  • Natters
    Natters Member Posts: 361
    edited June 2013

    Jo Ann, I'm so sorry to hear about your mom. You have a pretty strong family history, so I can see why they want to be really pro-active with you. I was relieved to hear your 5 years went by quickly. I don't think about itmuchanymore except after my mammos, which ever seem to be straightforward.



    I have missed a period once or twice - but I've also had a couple periods in the same month after starting Tamoxifen. I do not enjoy the extra PMS those months! I feel like my days of regular and normal periods are basically over, since I'll probably be peri-menopausal for real after my 5 years (my mom said she thinks she went thru menopause in her late 40s).

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  • artsee
    artsee Member Posts: 1,576
    edited June 2013

    Jo Ann...where did it return in your mom ? Must of been elsewhere and not in the breast again?

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