PET CT scan all clear at 3rd year

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tibet
tibet Member Posts: 545
edited June 2014 in Triple-Negative Breast Cancer

I had a all clean PET CT scan yesterday. I am approaching my 3rd year out this Sept and I wanted to have a PET CT to make sure that everything is clear.

Does anyone know that I am clean for 3 years, does it mean I can live to old? What's the recurrence stats for 3 yr clean early stage TN?

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  • yellowdoglady
    yellowdoglady Member Posts: 349
    edited May 2011

    My understanding is that at 3 years the risk drops sharply and you can expect to Live Happily Ever After.  If you have no sign of that beast now, well, you can even start planning to live long and prosper.  You aren't out of the woods just yet, but at nearly 3 years it's looking pretty good my friend.  What have you planned for your next vacation? 

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  • Luah
    Luah Member Posts: 1,541
    edited May 2011

    Congratulations newalex! Three years is a big milestone, recurrence drops off dramatically. Not to say the beast can't come back, but the risk is far more remote. Enjoy!!!

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  • thenewme
    thenewme Member Posts: 1,611
    edited May 2011

    WOOOOHOOOO - Newalex, thanks so much for sharing!!!  This is a positive inspiration for us all, and definitely a huge turning point as far as recurrence risk for you!

    Whatever you've been doing, keep doing it, and celebrate!  

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  • Titan
    Titan Member Posts: 2,956
    edited May 2011

    Yay Newalex!    Woo Hoo!  

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  • Suze35
    Suze35 Member Posts: 1,045
    edited May 2011

    That is wonderful news!  From my understanding, at 3 years your risk drops to what an ER+ woman can expect in terms of recurrence, and at 5 years, you are basically back to the risk of the general population.  It is a fantastic milestone!!

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  • tibet
    tibet Member Posts: 545
    edited May 2011

    I heard some one on the board saying the triple negative risk drops down after 6 yrs.

    Has anyone heard the 6 yrs number? 

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  • poptart
    poptart Member Posts: 101
    edited May 2011

    The way I think of it, and this is probably just generally accurate, not entirely accurate, is that the risk declines as time passes.  This would make it different than some other types of bc where the risk remains steady, and perhaps increases a bit after 5 years when people quit taking anti-hormonals.  I assume there is a point with triple negative that the risk becomes so low (after 8 years, 10 years whatever) as to remain steady.

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  • yellowdoglady
    yellowdoglady Member Posts: 349
    edited May 2011

    Poptart,

    For us, virtually NO risk remains after five years.  At least, that was what I was told.  We aren't on a ten or fifteen year calendar.  Five years is the end of being afraid unless in the odd case, the pathology got it wrong and there are some + genes out there.  Otherwise, we are free.     

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  • nastazia_s
    nastazia_s Member Posts: 57
    edited May 2011

    hi all,

    do you have a PET CT as a yearly follow up?

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  • tibet
    tibet Member Posts: 545
    edited May 2011

    So far, I tried to ask for PET CT scan every year during the first 3 yrs. My doctor so far agreed to it and my insurance pays for it. But after 3 yrs, my doctor would not give PET CT scan every year, but maybe every 2 years till 5th yr. He does blood work every 3 months checking liver, tumor marker.

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  • nastazia_s
    nastazia_s Member Posts: 57
    edited May 2011

    Thank you Newalex for the reply..

    Do you have and breast MRI and mammograph yearly?

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  • tibet
    tibet Member Posts: 545
    edited May 2011

    No I don't have breast MRI or mamo because I had bilateral mast and reconstruction. I would do US sometimes to see if the implant is fine or so.

    Do you do any PET scan yearly? You should demand it. It is the most sensitive to detect things although it has more false positive than false negative but at least it gives security if nothing. 

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  • gillyone
    gillyone Member Posts: 1,727
    edited May 2011

    newalex - congrats on three years. A major milestone especially for TNs.

    The reason many oncologists do not do routine scans is that finding recurrence or mets through a scan or through developing symptoms makes no difference to treatment and future outcomes. Some people want the reassurance of a scan, even if it means they have to endure the stress of a false positive. Others prefer to carry on and  do something only if symptoms dictate scans are necessary.

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  • yellowdoglady
    yellowdoglady Member Posts: 349
    edited May 2011

    Nonsense.

    The reason routine scans are not done is that there is no insurance money to pay for it or the doc is tired of fighting to get it paid.

    The idea that not finding recurrences or metastasis early makes no difference in outcome is total bunk.  My stepsis (not a TN) lived 8 years after she would have if she had been a nice girl and done as she was told.

    I am TNBC, and I'd surely like to know whether to plan my return to the ring, my retirement, or my funeral.  So I get scans.  Probably, I should not worry my pretty little head, but I'm way beyond that.  The notion that you think I can do nothing at all if I am faced with that beast again just makes me think you either are not threatened or do not understand the question.

      

         

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  • Luah
    Luah Member Posts: 1,541
    edited May 2011

    It does seem counter-intuitive that routine scanning doesn't improve odds, but that's what research shows, including this study: http://jama.ama-assn.org/content/281/17/1586.long

    Also, when I pressed my onc on this issue, she said that a recent study showed that at least 75% of recurrences were diagnosed between the routine scans, the result of patient symptoms or clinical exam.  

    There is also this, which even calls into question the frequency and length of follow-up clinic visits in the U.S. http://breast-cancer-research.com/content/10/S4/S7

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  • tibet
    tibet Member Posts: 545
    edited May 2011

    With PET CT scan once a year during the first 3 years, I think gives some security to patients. I heard PET CT scan has very little radiation, like 2 times more than natural radiation one gets around from nature, building, flying, etc. So it is not harmful if one is limited to only yearly during the first three yrs and after 3 years shall be reduced to once every two years for another 2 years till reaching 5 year mark then for TN the recurrence risk becomes really low. This is what I what to do. And my insurance always pays for it as long as my doctor prescribe the scan. Never was a discussion in term of money and payment. I like my insurance company.

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