What kinds of follow ups do you do?

Michael1956
Michael1956 Member Posts: 4 Member

I was wondering what kind of follow ups do you do. I'm new to this, only 1 month out of surgery. I had a partial nephrectomy to remove a 5 cm RCC off my right kidney. Initial assessment is that it was all removed with nothing outside the kidney. I will have a repeat CT scan in September  and probably yearly scans after that. Both my surgeon and my GP do not seem to think that it is necessary to go to an oncologist for any additional treatment  unless  just for peace of mind. I know everyone's experience is different, but I just wanted to know your thoughts.

Comments

  • Bay Area Guy
    Bay Area Guy Member Posts: 546 Member
    I have an annual CT scan and

    I have an annual CT scan and chest x-ray until five years post surgery.  My follow-up appointments are with a physician assistant at Stanford (reports to the surgeon), mainly because the scans and x-rays show that nothing has changed in my kidney area, so the docs don't need to see me.

    After the five year mark, I'm going to see if my primary care physician can get me annual or bi-annual ultrasounds just to make sure everything is ok, but also to check on some other issues that have run in my family (aortal weakness and twisting intestines).


  • a_oaklee
    a_oaklee Member Posts: 566 Member
    Hi. Do you want to know our

    Hi. Do you want to know our thoughts on what was suggested to you?  I would want CT of chest, abdomen and pelvis at 6 months for 2 years, then annual for 3 more years.  After that I think an annual scan or ultrasound would be okay.  

     

    My suggestion is based on insufficient info.  Age, family history, symptoms, type of RCC etc..  

    Additionally I think it's really important to monitor lab work at  the same intervals.  Hemoglobin, and creatinine, liver function, calcium, c reactive protein  etc.  Just do a full panel.

    I personally believe in going to specialists, so I think having an oncologist for at least one visit would be in order. 

    Always review your own  reports.

    My husband is Stage 4 so everything is very different than Stage 1, 2, 3.  I know fellow Stage 4 patients who have brain scans also on a routine basis.  My husband has chosen to not mess with his brain unless he had symptoms requiring it.

  • APny
    APny Member Posts: 1,995 Member
    I was stage 1, tumor 3.5 cm

    I was stage 1, tumor 3.5 cm or something like that. For the first three years I had US of kidney and chest x-ray every six months. Then a CT scan of chest and US yearly. This is my fifth year and if CT of chest clear that'll stop and revert back to x-ray. Don't know if I can continue being monitored after 5 years but I intend to insist on it as much as I hate it. My follow up is with my surgeon who is a urologic oncologist. Many medical oncologists will not accept patients unless they have active cancer.

  • Madame Y
    Madame Y Member Posts: 5
    Six Month CT

    Hi Michael,

    I had a partial nephrectomy in March with a removal of a 4cm Stage 1 tumor. I have been told that the follow up is six month CT scan, then 12 month for five years. Still can't quite believe any of this has happened. 

  • Blessedgirl94
    Blessedgirl94 Member Posts: 10 Member
    My CT scan was just denied...

    I had a partial 3 years ago June 7-  diagnosis ChRCC.  My tumor was 1.8cm- stage 1.

     

    The past 2 years I had CT scans, this year my insurance denied-  I am grateful that I was stage 1, but am nervous not to be scanned 1x a year for at least 5 years?  My Dr did request.

     

    Just curious if anyone else has ever been denied-  how should I proceed?

    Thanks in advance....

  • Manufred
    Manufred Member Posts: 241
    Vigilance

    Michael,

    Without wanting to sound too pessimistic, you can never be sure that it wont come back, as I learned myself about 3 years after my radical nephrectomy.

    In the absence of any better options being available as yet, routine CT scans would seem the least you can do. And hope the radiologists are good enough to pick up any early signs.  

    Eventually they will develop a reliable blood test for cancers, but we are not there yet.

    Regular scans, if the results are clear, also give you the peace of mind to get on with your life.

    Best Wishes, Fred

  • daisybud
    daisybud Member Posts: 529 Member

    My CT scan was just denied...

    I had a partial 3 years ago June 7-  diagnosis ChRCC.  My tumor was 1.8cm- stage 1.

     

    The past 2 years I had CT scans, this year my insurance denied-  I am grateful that I was stage 1, but am nervous not to be scanned 1x a year for at least 5 years?  My Dr did request.

     

    Just curious if anyone else has ever been denied-  how should I proceed?

    Thanks in advance....

    Me

    My insurance denied at 3 years too even though dr requested it. Told me after I had ct.  I had to do self pay. I will try again at 4 years. Hopefully will pay, if not then I will have to self pay again

    Kim

  • Matt1979
    Matt1979 Member Posts: 9

    My CT scan was just denied...

    I had a partial 3 years ago June 7-  diagnosis ChRCC.  My tumor was 1.8cm- stage 1.

     

    The past 2 years I had CT scans, this year my insurance denied-  I am grateful that I was stage 1, but am nervous not to be scanned 1x a year for at least 5 years?  My Dr did request.

     

    Just curious if anyone else has ever been denied-  how should I proceed?

    Thanks in advance....

    Also denied

    I just went for my 3rd CT scan last week (18 months since surgery) and was denied initially at my last scan (12 months) and again this time around.  Last one got approved finally after my doc called them, but this time they pushed back harder.  They finally approved the latest abdomen CT and chest Xray, but it sounds like they are not going to approve anything at six month intervals going forward.  

  • Bay Area Guy
    Bay Area Guy Member Posts: 546 Member
    daisybud said:

    Me

    My insurance denied at 3 years too even though dr requested it. Told me after I had ct.  I had to do self pay. I will try again at 4 years. Hopefully will pay, if not then I will have to self pay again

    Kim

    Daisy and Blessed.....you

    Daisy and Blessed.....you might also want to see if your insurance would spring for an ultrasound instead of a CT.  They’re less expensive (and less radiation).  I’ve had both, and i’m not sure of the r3lative accuracy of each, but if your insurance would go for it, it would be better than no follow-up at all.

  • Wehavenotimeatall
    Wehavenotimeatall Member Posts: 488 Member
    It’s a minefield

    No to the oncologist.. nothing they can do

    yes to six months scans

    kidney cancer is notoriously sneaky 

    please dont go into panic mode

    but I don’t understand 

    you have kidney cancer 

    find kidney cancer

    remove kidney cancer..cured

     

    but the only way to keep it like that is check and check..six months minimum

    so I am with the mob above... we stick together

    it will get easier

    stay strong 

    Annie