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Follow Up Scans Revisited

Steve.Adam
Steve.Adam Member Posts: 463
edited June 2017 in Kidney Cancer #1

I had a ct scan on Thursday and Today I got my first NED...

But, it might be my last because apparently no further scans are required (except an ultrasound in six months to 'monitor renal bed').

Now isn't that strange? I assumed I'd get a similar follow up protocol to you North Americans.

Are there any other Australians reading this?

The doc I talked to today said my GP could monitor things so I guess I can ask him to refer me to scans every year or so.

Anyway, it's good to be NED. Once again I didn't think I was worried until I felt the wave of relief after getting the all clear.

Other news... My eGFR is 56, down from 66 in early April, so I didn't get the contrast dye. I've been a bit slack with my healthy lifestyle and put on 10kg since the op. Time to get back on track.

Steve.Ned.Adam

Comments

  • donna_lee
    donna_lee Member Posts: 1,018
    edited June 2017 #2
    Are you a Duck?

    As in you are a really lucky duck.  Congrats and all those fine things we say to those who are NED.

    Your docs must be adhering to a rigid protocol on eGFR.  Sob? your eGFR is down to 56!  Mine probably wasn't that high before I had a kidney removed.  I feel like I'm doing fabulous to break 40-43.

    Keep up the good work and keep us in the loop about next test schedules.

    WAY TO GO!!

    donna_lee

  • Steve.Adam
    Steve.Adam Member Posts: 463
    Thanks Donna

    Big smile here... Yes, I'm a lucky ducky all right! (Optionally add other rhyming words for emphasis).

    The radiologist said the eGFR was in an OK range but they didn't like the recent drop.

    There is no test schedule. The Ipswich General Hospital Urology Dept. has pretty much waved goodbye.  The ultrasound in December is checking 'soft mass associated with surgical clamps' if I remember right.

    Anyway... I am going to stay away from doctors until at least December.  I will most certainly arrange for follow up scans in future, you can bet on it.

    Steve.

  • BoondockSaint
    BoondockSaint Member Posts: 242
    Good news Steve. Good news

    Good news Steve. Good news indeed!!

    I also think it's wise to request future scans.

  • foxhd
    foxhd Member Posts: 3,181
    Nice! Steve

    Seeing people do well makes me very happy. If you can finagle a yearly scan,make it happen. We have seen mets return 5,10, even 14 years later.

  • CRashster
    CRashster Member Posts: 241
    OK

    This is going to sound weird coming from me...at my last visit, my doc recommended the ultrasound, instead of CT scan deal. I insisted on the scan, if my insurance approves. Mostly, because the docs office has the CT machine and the ultrasound would be at the hospital. That would probably mean 1/2 a day's wait at the hosptial vs 1 hour at the office. Maybe moving to the ultrasound is a better deal now.

  • lobbyist0724
    lobbyist0724 Member Posts: 471 **
    In Canada, we don't do CT for

    In Canada, we don't do CT for T1a tumors (US only) and CT is optional for T1 tumors at 24 months and 60 months. Which depends on the risk level, grades, MVI and other prognotic factors. Also, I am sure your age is important too since my doctor mentioned that he doesn't want me to expose to too much radiation.

  • stub1969
    stub1969 Member Posts: 933 **
    Congratulations, Steve

    Great news.  Thanks for sharing!

    Stub

  • daisybud
    daisybud Member Posts: 521
    Great news :)

    Good news Steve!

    Kim

  • Jan4you
    Jan4you Member Posts: 1,327
    edited June 2017 #10
    Good for you, Steve!

    Good for you, Steve!

    thanks for sharing your good news with us! 

    May you know many more good results!

    Hugs, Jan

  • Steve.Adam
    Steve.Adam Member Posts: 463

    In Canada, we don't do CT for

    In Canada, we don't do CT for T1a tumors (US only) and CT is optional for T1 tumors at 24 months and 60 months. Which depends on the risk level, grades, MVI and other prognotic factors. Also, I am sure your age is important too since my doctor mentioned that he doesn't want me to expose to too much radiation.

    Mine was T1b

    So I guess that is normal here too.

    I viewed my scans online and I can't see how they can find anything tiny. I don't know how to 'read' a scan, of course, but the resolution just doesn't seem high enough for small stuff. Maybe there's no point scanning until tumours are bigger than a few cells.

    Steve.

     

  • APny
    APny Member Posts: 1,995
    Congrats! My protocol is

    Congrats! My protocol is yearly US, x-ray, and blood work.

  • Steve.Adam
    Steve.Adam Member Posts: 463
    Thank you all

    Thank you all for your good wishes and kind thoughts.

    Steve.

  • sandy23
    sandy23 Member Posts: 143
    Great news, Steve!!  You must

    Great news, Steve!!  You must be so relieved.  Thanks for sharing!!

  • foroughsh
    foroughsh Member Posts: 779
    Great news Steve

    Great news Steve

    Every good news each member shares, helps us to remain more and more hopeful, thanks for sharing your news

  • JerzyGrrl
    JerzyGrrl Member Posts: 760
    Congrats!

    Congrats on the visit from Uncle Ned. As for the extra weight, maybe better to aim for more 10Ks so there's less of the 10kg? Whatever you do, enjoy!

  • Allochka
    Allochka Member Posts: 974
    Congrats! Hug uncle NED from

    Congrats! Hug uncle NED from us! We are in Northern Europe, and husband get 6 months US and bloodwork for his Stage 1a grade 1 tumor plus yearly chest X-ray. However, I'm under impession that his doc is not going to continue follow up imaging 3 years after surgery (I'll never agree to that and hopefully will persuade my husband to continue. US and x-rays are really cheap here)...

  • Steve.Adam
    Steve.Adam Member Posts: 463
    JerzyGrrl said:

    Congrats!

    Congrats on the visit from Uncle Ned. As for the extra weight, maybe better to aim for more 10Ks so there's less of the 10kg? Whatever you do, enjoy!

    10K?

    Do you mean 10km runs? I've never been a runner.

    Maybe I'm turning into a yo-yo dieter... Nooooooooo.....

    Steve.

  • JerzyGrrl
    JerzyGrrl Member Posts: 760

    10K?

    Do you mean 10km runs? I've never been a runner.

    Maybe I'm turning into a yo-yo dieter... Nooooooooo.....

    Steve.

    Nooo...

    Steve, running is one of those things that I really don't enjoy doing very much. What's the joke - If you ever see me running, dial 911, because I'm probably being chased by a rabid dog or someone with a knife.

    10Ks can most certainly be walked, you know. When I was (much!) younger, I even swam a few. But nowadays walking is good. 

  • Steve.Adam
    Steve.Adam Member Posts: 463
    JerzyGrrl said:

    Nooo...

    Steve, running is one of those things that I really don't enjoy doing very much. What's the joke - If you ever see me running, dial 911, because I'm probably being chased by a rabid dog or someone with a knife.

    10Ks can most certainly be walked, you know. When I was (much!) younger, I even swam a few. But nowadays walking is good. 

    Let's go walkin'

    Ok, I'm right there with you. :)

    Steve.

  • Bellafelice
    Bellafelice Member Posts: 57
    Get the CT scans-not ultrasound

    Dear Steve-In 2016 (after having been all clear for 8 years) our dr. just ordered a CT scan-it showed no mets. In 2017 he had a some blood in his urine(total coincidence-it was a prostate infection) . Thankfully that caused Dr. to order a CT scan-and 2 mets on the spine were found. He was treated by SBRT and has been on Votrient since March of this year. (By the way in 2015 the mets were there as well but the "radiologist" did not report them). At any rate, go for the CT scan-protect yourself as much as possible. Hope this helps.

  • todd121
    todd121 Member Posts: 1,448
    edited June 2017 #22
    Follow-up Protocol

    The protocol here in the US has been criticized for not being aggressive enough. You want to catch recurrences early while they are operable if possible. If you catch them too late, you can miss a chance to return to NED with a simple surgery or targeted radiation. Ultrasounds don't catch things that early. CTs are better at that.

    When I had Stage 3, I had an MRI of my brain to make sure that was clean as a baseline, a nuclear bone scan (as a baseline), and a CT of chest/abdomen and pelvis. Then after that I had CT of chest/abdomen and pelvis every 4 months the first year, then every 6 months to 3 years, then was going to have it annually after that forever. I know people that were Stage 1 that had mets 10 even 20 years later. It's not so common. Since I had the met in my adrenal gland, I now get my CT scans every 3 months. I was concerned about the radiation also. My oncologist told me that bad results from this level of radiation doesn't show up for decades and that the amount I'm getting is not a worry. He wants to catch any recurrences early so if possible I can get another surgery instead of having to go on drugs. I'm all for that.

    One of my friends that has had this twice (and she had IL2 and was cancer free for several years before it came back), had gotten to 10 years and they wanted to stop paying for her scans. She talked to her doctor, and he said not to worry. He'd find a way to get her a scan every year.

    Just do your best to get the best followup you can. That's all you can do.

    Todd

  • Steve.Adam
    Steve.Adam Member Posts: 463
    I'm convinced

    I'm convinced that catching mets early is priority one.

    For the time being I'll avoid doctors for a while.  Since I'm stage one I should have no immediate concern but I will most certainly arrange regular scans in future.

    Steve.

  • Skagway Jack
    Skagway Jack Member Posts: 224
    Where do MRI's fall out on the diagnostic scale?

    I had right radical nephrectomy in 2013.  NED so far but I moved last year and new Doc has me scheduled for MRI and chest xray for my annual.  I thought that CT's were the standard?  New Doc also says this will be the last year for diagnostic scans.  Not sure how I feel about that; on the one hand it will be nice not to worry about scans, but I would hate to miss the opportunity to treat somethng ealry if it returns.  Appartently the standard of care varies even within the US.

     

  • APny
    APny Member Posts: 1,995
    edited July 2017 #25
    Yes, standard care does vary.

    Yes, standard care does vary. I had my surgery at Sloan Kettering and my protocol now is yearly US and chest x-ray. It was every six months for the first 3 years then they told me once a year is fine. I know the common wisdom on this forum is CT scans but I would imagine SK being a top cancer hospital knows what it's doing. The US picked up two under 1 cm (6.5 mm) cysts in each kidney two years ago and we're monitoring them. So apparently US can detect small growths provided the technician is skilled. But we all have our comfort zones, doctors included, so everyone should follow whatever they feel more comfortable with and what their oncologist recommends. I don't think I'd feel comfortable giving up follow ups even though I'd love to. I think I would continue even after 5 years.