Been gone awhile

Nana4life
Nana4life Member Posts: 78 Member
in Kidney Cancer #1

Hello Everyone,

Ive been gone awhile from this sight. I needed time to be away from the cancer thing. Sort of a denial I guess. I wanted to give you an update on me and my son. I have been NED since my last scans (Feb). I'm coming up on my year mark here in June. Lately I've been struggling a bit with what I hope is just digestive issues but as you all know any pain or problem I immediately go to mets. Ive been spending the majority of my time working, helping with my new grand daughter, eating healthy and preparing for a 5k run in San Francisco. 

My son had his full neph in Nov. he is doing well, was back at work in a few weeks after surgery. He went for his post op appt. doctor said "Everything looks good....see you in a year. FYI....he was stage 3 RCC. Needless to say I was furious and finally convinced my son to head across the street to MD Anderson. He saw someone and they highly encouraged genetic testing and regular scans. My son is very hesitant to have scans every three months. He thinks it will be hard on his other kidney. Well come to find out it is possible that his other kidney may be struggling. He'll find out the results Friday. I am deeply discouraged for him. Ecspecially because he is so young 37. Anyone out there have other kidney issues. Fortunately he lives in the Houston area so MD Anderson will be where he will see doctors. 

He'll be having genetic testing at MD Anderson early May. Our case is extremely rare. They are baffled as to why we each got kidney cancer and yet two different subtypes. Im a Chromophobe he's Clear cell. They think either somebody made a mistake with the pathology report or its totally random. Has any of you ever heard or experienced a mistake by the pathologists?

Sorry been gone so long. I truly respect your opinions and advice. 

Nana4life

Comments

  • Allochka
    Allochka Member Posts: 1,062 Member
    #2
    Hi Nana,
    I have no experience

    Hi Nana,

    I have no experience with pathologists mistakes, but I know from experience that even very rare and strange things sometimes happen. So perhaps your case is just a weird, rare coincidence.

    But it is better to check, so good that your son is getting tested. And good that you've persuaded him to be scanned more frequently, it is very important.

    It is clear you are very worried about your son, but here are other people with Stage 3 and no recurrences!

  • APny
    APny Member Posts: 1,995 Member
    #3
    Allochka said:

    Hi Nana,
    I have no experience

    Hi Nana,

    I have no experience with pathologists mistakes, but I know from experience that even very rare and strange things sometimes happen. So perhaps your case is just a weird, rare coincidence.

    But it is better to check, so good that your son is getting tested. And good that you've persuaded him to be scanned more frequently, it is very important.

    It is clear you are very worried about your son, but here are other people with Stage 3 and no recurrences!

    Stage 3 and see you in a

    Stage 3 and see you in a year? What? Glad you made him go elsewhere. Even CT scans without contrast or ultrasound scans would be better than no scan. I know common wisdom here is CT with contrast but a good technician with good equipment can detect very small growths even on an US. Mine picked up one well under a centimeter (cyst, thank God but we're watching it). So yes, at stage 3 he should be monitored more frequently than yearly.

    Glad you are doing well and hopefully all will go well with your son also so that you can relax a bit. I’m not a physician but my thinking is that it was just a weird, random coincidence as Allochka said and it’s not a genetic thing.

  • Ree_Maryland
    Ree_Maryland Member Posts: 161 Member
    #4
    APny said:

    Stage 3 and see you in a

    Stage 3 and see you in a year? What? Glad you made him go elsewhere. Even CT scans without contrast or ultrasound scans would be better than no scan. I know common wisdom here is CT with contrast but a good technician with good equipment can detect very small growths even on an US. Mine picked up one well under a centimeter (cyst, thank God but we're watching it). So yes, at stage 3 he should be monitored more frequently than yearly.

    Glad you are doing well and hopefully all will go well with your son also so that you can relax a bit. I’m not a physician but my thinking is that it was just a weird, random coincidence as Allochka said and it’s not a genetic thing.

    scans coming up

    I am going on my second yr NED .but now im nervous , my scans, mri coming up next week for recheck, see Dr April 6th for results . hoping and praing all goes well and NED. 

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