Scanxiety

Ktmg
Ktmg Member Posts: 24 Member
in Kidney Cancer #1

Getting my next follow up scan tomorrow. I'm just feeling ....eery.

I know the first one (right after procedure) was fine, but what if it comes back? What if the last scan was wrong?

Anyone else have these feelings?

«1

Comments

  • Steve.Adam
    Steve.Adam Member Posts: 463 Member
    edited June 2017 #2
    Eery feelings

    Hi Ktmg,

    If your tumour was stage 1 or 2 and your first scan was clear then I think it is very unlikely to have any recurrance.  Of course I am no expert.

    Waiting for scan results is eery. I think everyone feels it.

    Steve.

  • APny
    APny Member Posts: 1,995 Member
    #3
    I always get scanxiety. I

    I always get scanxiety. I hope all went well today and Uncle NED paid you a visit.

  • Hd67xlch
    Hd67xlch Member Posts: 151 Member
    edited June 2017 #4
    Had scans this Monday myself.......

     Im waiting for my results to show up on the hospital patient portal so I will know where I stand before I even see the DR next week. Im on 6 + years of scans,  the anxiety doesnt ever go away, but it does get alot easier after a few neds. But you got to stay vigilent and keep having the scans because regardless of stage it can come back at any time, good luck.

  • Ktmg
    Ktmg Member Posts: 24 Member
    #5
    Hd67xlch said:

    Had scans this Monday myself.......

     Im waiting for my results to show up on the hospital patient portal so I will know where I stand before I even see the DR next week. Im on 6 + years of scans,  the anxiety doesnt ever go away, but it does get alot easier after a few neds. But you got to stay vigilent and keep having the scans because regardless of stage it can come back at any time, good luck.

    Are you at least down to

    Are you at least down to annual scans and not every 3 months?

  • Hd67xlch
    Hd67xlch Member Posts: 151 Member
    #6
    Ktmg said:

    Are you at least down to

    Are you at least down to annual scans and not every 3 months?

    I was annual

    I was every 6 months the 1st two years, then years 3-5 once a year, then it metastisized to my lungs at the end of year 5. Then I had two lung surgeries to remove it, and have been on scans every 4 months for over a year now, my last 2 scans have been NED again, waiting on results from this weeks scans, hoping for the best. Good luck.

  • APny
    APny Member Posts: 1,995 Member
    #7
    Hd67xlch said:

    I was annual

    I was every 6 months the 1st two years, then years 3-5 once a year, then it metastisized to my lungs at the end of year 5. Then I had two lung surgeries to remove it, and have been on scans every 4 months for over a year now, my last 2 scans have been NED again, waiting on results from this weeks scans, hoping for the best. Good luck.

    Hoping for NED results for

    Hoping for NED results for you Hd67!

  • foroughsh
    foroughsh Member Posts: 779 Member
    #8
    Hd67, KtmgWishing you both

    Hd67, KtmgWishing you both Ned NED results

  • Ktmg
    Ktmg Member Posts: 24 Member
    #9
    Hd67xlch said:

    I was annual

    I was every 6 months the 1st two years, then years 3-5 once a year, then it metastisized to my lungs at the end of year 5. Then I had two lung surgeries to remove it, and have been on scans every 4 months for over a year now, my last 2 scans have been NED again, waiting on results from this weeks scans, hoping for the best. Good luck.

    I'm still at 3 months.

    I'm still at 3 months.

  • Ktmg
    Ktmg Member Posts: 24 Member
    edited July 2017 #10
    It wasn't NED.....

    It wasn't NED.....

  • Hd67xlch
    Hd67xlch Member Posts: 151 Member
    #11
    Hd67xlch said:

    I was annual

    I was every 6 months the 1st two years, then years 3-5 once a year, then it metastisized to my lungs at the end of year 5. Then I had two lung surgeries to remove it, and have been on scans every 4 months for over a year now, my last 2 scans have been NED again, waiting on results from this weeks scans, hoping for the best. Good luck.

    I got good results, I think........

    Granted I  dont see the Dr till July 10th, but my scans on the patient portal said no detrimental changes compared to previous scans in March. March is when the Surgeon and Oncologist told me I was NED again, so thats 3 NEDs since my last surgery. Had a different scan Dr read them this time which I hate, since  the last few years it was always the same Dr reading them, and they all word things differently, but it sounds like Im still good.

  • CRashster
    CRashster Member Posts: 241 Member
    #12
    Ktmg said:

    It wasn't NED.....

    It wasn't NED.....

    damn.

    sorry.

  • Jan4you
    Jan4you Member Posts: 1,330 Member
    #13
    Here for you, Ktmg. We'll be

    Here for you, Ktmg. We'll be here all the way. What happened?

    Sending you healing hugs,

    Jan

  • foxhd
    foxhd Member Posts: 3,181 Member
    edited July 2017 #14
    Sometimes

    it isn't as bad as it could be. God bless everyone who remains ned. Great luck and fortune. But so many have mets at some point. The fact that you show disease probably means small mets had been released earlier. And like many, you will begin a drug like an antiangiogenesis or an immunolgic. I believe the sooner you start the better off you are. Find the lowest effective dose.  Life is good, your future looks great.

  • Ktmg
    Ktmg Member Posts: 24 Member
    #15
    Jan4you said:

    Here for you, Ktmg. We'll be

    Here for you, Ktmg. We'll be here all the way. What happened?

    Sending you healing hugs,

    Jan

    They found an area of

    They found an area of "enhancement" but they wont declare it a recurrance. They want to wait three months and do an MRI. I'm not into waiting, but I'm also not into doing tests for no good reason. So, I guess I'll wait.

  • Ktmg
    Ktmg Member Posts: 24 Member
    #16
    foxhd said:

    Sometimes

    it isn't as bad as it could be. God bless everyone who remains ned. Great luck and fortune. But so many have mets at some point. The fact that you show disease probably means small mets had been released earlier. And like many, you will begin a drug like an antiangiogenesis or an immunolgic. I believe the sooner you start the better off you are. Find the lowest effective dose.  Life is good, your future looks great.

    Thank you

    Thank you

  • Hd67xlch
    Hd67xlch Member Posts: 151 Member
    #17
    I wouldnt stress about it at this point...........

    Was it on the same kidney you had the ablation on? If so thats about as good as it can get if its going to recur and isnt anywhere else. Id guess if it returns to that kidney you would probably just have that kidney removed and thats the end of that. Id try to be positive and think that they have not declared it a reccurance, and try not to let your mind drive you crazy, the mental part is worse than the cancer.

  • donna_lee
    donna_lee Member Posts: 1,045 Member
    #18
    NOT NED

    rSo, what do you do?  They don't use those simple terms, but I've heard that result twice.  It's scary, maddening, and every other swear word you can throw at it. After you wipe your tears and tell your spouse, you call back and tell them you want confirmation and get the next test set up ASAP.

    First Surgery was in 2006 and they removed a lot of cancer and all or parts of numerous organs.  Regular CT scans every 3 months, and the difference in one little node between scan 3 and 4 was enough to trigger the NOT NED Dx. The following week I had a fine needle aspiration biopsy, got the results in 2 days, and called my surgeon's office.  He was at an East Coast conference and his secretary had sent text on a blackberry.  He texted back to contact her and get the surgery scheduled...for two weeks later.

    Skip ahead to spring of 2008, and the CT gave similar results, only this one was in a difficult place so I had to wait a week for the mobile PET scanner to be brought to our region. The node lit up with the concentrated sugar solution; decided to have a local surgeon remove it and away we went.

    You used the phrase, "what if it comes back."  Well it was never really all gone.  Cells had escaped from the primary tumor and hadn't enlarged enough to show on any kind of test.  What do you do now?  What ever is necessary to remove it from your body has been my attitude.

    And thus far, it's been 8 years since the last recurrence.

    Best of luck in your decision making and Hugs in the meantime.

    donna_lee

     

  • JerzyGrrl
    JerzyGrrl Member Posts: 760 Member
    edited July 2017 #19
    Ktmg said:

    They found an area of

    They found an area of "enhancement" but they wont declare it a recurrance. They want to wait three months and do an MRI. I'm not into waiting, but I'm also not into doing tests for no good reason. So, I guess I'll wait.

    Areas of "enhancement"

    I got one of those, too. The doctor pointed out that it was by the surgery site and they'd zapped one edge / margin (cauterized is actually what he said, but I think zap has a little more super-hero feel to it). Anyway, for now he's calling it scar tissue, hope it doesn't turn out to be "scare" tissue. 

    Whichever, they're keeping an eye on us, not that long between scans, which is a good thing. Here's to vigilant care teams!

  • Ktmg
    Ktmg Member Posts: 24 Member
    #20
    JerzyGrrl said:

    Areas of "enhancement"

    I got one of those, too. The doctor pointed out that it was by the surgery site and they'd zapped one edge / margin (cauterized is actually what he said, but I think zap has a little more super-hero feel to it). Anyway, for now he's calling it scar tissue, hope it doesn't turn out to be "scare" tissue. 

    Whichever, they're keeping an eye on us, not that long between scans, which is a good thing. Here's to vigilant care teams!

    I wonder how they tell the

    I wonder how they tell the difference between scar tissue and a new growth?

  • daisybud
    daisybud Member Posts: 541 Member
    #21
    I had

    I had also had a hyperintense area near the spot of tumor removal on 6 month mri followup that said favored scar.  At one year just said no signs of reoccurence.  I was told just scar tissue  and no need to worry.

    Kim

    Kim

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