5 yrs ned. Follow up questions

daisybud Member Posts: 541 Member

I have a question for you guys. I just had my 5-year check up and I was Ned! The oncologist I was seeing said I'm done and no longer need any follow-up scans or ultrasounds. Today I went to the urologist who did my surgery and he said I'm cancer-free. I'm a little worried about not having any more follow-up scans or ultrasounds. I asked him if he would give me one yearly. So at least for next year I'm still having an ultrasound but not a chest xray. Just wondering for you guys that are round 5 years out or the same approximate time as me what's your follow-up is for the years to come? Seems like once you are st 5 years they're done with you. Just a scary prospect for me not to be watched.

Thanks, Kim


  • icemantoo
    icemantoo Member Posts: 3,361 Member
    edited February 2021 #2
    It depends

    I still get us's every 18 months or so because I have a sub cm cyst in the remaininhg Kidbey that they watch.




  • Bay Area Guy
    Bay Area Guy Member Posts: 619 Member
    edited February 2021 #3
    At my four year mark, I got

    At my four year mark, I got released from any more scans.  They referred me to their Survivorship Program (Stanford Hospital being the "they").  They do follow-up visits to talk about coping with the whole process and ask what they can do to help survivors.  Because I have some strange abdominal issues (twisting intestines that have, twice, resulted in blockages thatvrequired emergency surgery) and because my dad had an aorta aneurysm that resulted in an aorta replacement surgery on the anniversary of the day that his father died of a ruptured aorta (talk about a going into a surgery with that kind of memory), I'm going to try to get referred for an abdominal ultrasound every year just to check up on those two issues, plus get a peek at the kidneys.  If insurance won't cover it, I'm prepared to pay out of pocket for it, but I'm guessing an ultrasound would be much easier to get approved than a CT.

    And since we travel to Asia quite a bit, there's always Thailand or Taiwan for the ultrasound.

  • daisybud
    daisybud Member Posts: 541 Member
    edited February 2021 #4
    I agree

    I will also pay out of pocket for ultrasound.  Its just peace if mind for me. 


  • Hd67xlch
    Hd67xlch Member Posts: 151 Member
    edited February 2021 #5
    Yea right...........

    I was done at 5 years then it came back to both lungs, dont stop scanning the rest of your life,jmo

  • stub1969
    stub1969 Member Posts: 966 Member
    edited March 2021 #6
    10 years

    I was told at my last appointment (June 2020) that they plan for me to have scans for 10 years then Ultra Sounds.  I'm not sure how my insurance company will like that, but that's what they said.  I know there are guidelines for scans based on the stage of cancer, but I can't help but wonder if local decisions also are at play.  It also could be they are extending mine because I had positive margins.  

    Daisy, we've been told since our diagnosis that RCC is a sneaky cancer--for that reason alone I'd pursue additional scans or ultra sounds.

    Good luck!


  • Bellweather
    Bellweather Member Posts: 102
    I would get a second opinion.

    I would get a second opinion. Less frequent scans are understandable. None is questionable imo. 

    Great news of Ned for 5 yrs, congratulations!

  • donna_lee
    donna_lee Member Posts: 1,043 Member
    edited March 2021 #8
    If it was confined to just the kidney...

    I might say OK.  Might!  I'd feel better if he continued to monitor you, even with an US to the 10 year mark.  Then every 2 years after that.

    Since mine had already mets to the Liver and nodes, and had 2 recurrences, I don't think I'll ever be off the list for a need to monitor.

    I agree with Bellweather, get a second opinion.

    Air Hugs,


  • Scottie22
    Scottie22 Member Posts: 99 Member
    edited March 2021 #9
    Follow ups

    I am comimg up on 8 years next month. I have been having a mixture of CT, ultrasound, chest xray annually since. Last year doc ordered CT and chest xray but insurance nixed the CT. Doc said Ultrasound and chest xray would suffice and insurance agreed. All was well so it will be US and chest xray again in August. I am happy with that.

  • daisybud
    daisybud Member Posts: 541 Member
    edited March 2021 #10
    Thanks everyone

    I'm definitely going to push for yearly ultrasound and/or cts.  

    I just don't get how its so different. Oncologist said I'm done but urologist said he would

    Do US  but only because I said I wasn't happy about getting no more follow-ups.