Partial nephrectomy 5/12 continued complications-atlanta ga

maryellenatl
maryellenatl Member Posts: 2
in Kidney Cancer #1
Hello everyone,


My father had a partial nephrectomy in May to robotically remove a mass that turned out to be cancerous. The tumor was deep in the kidney and it took 6 hours to complete. He came home with a jp drain. He ended up having to go back to the doctor to get a catheter. He has had to measure the output of both the catheter and the drain and email it to the doctor each time he emptied them. Since then he has had 5 other cathethers put in and he still has the jp drain. It has been almost 6 months. The doctor keeps saying that its just slow to heal. He is in tremendous pain daily due to the catheter and can barely sit for long periods of time. He has lost a ton of weight and a lot of his vitality due to the continuing ordeal of bladder spasms with the catheter.

Has anyone else had these types of problems? We are now looking at getting a second opinion, and I would love to know whether you would recommend a cancer doc or going to a different nephrologist. Is there anyone in GA with a doctor recommendation to share?

I would appreciate any advice or help anyone is willing to give.

Many thanks,

Mary Ellen

Comments

  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    #2
    Fluid and catheter problems
    Mary Ellen, how old is your Father? We have a member here, flatlander, who had similar problems for a lengthy period. I hope he may see your posting and respond. I'm no expert, but I think a second opinion would be a good idea and I would have thought a urologist would be more appropriate than a nephrologist at this stage.

    I'm in Scotland so can't help re doctors in your area but I strongly recommend that you join the KIDNEY-ONC list and put the same question there. You are certain to get a lot of useful replies from that source.
  • maryellenatl
    maryellenatl Member Posts: 2
    #3
    Texas_wedge said:

    Fluid and catheter problems
    Mary Ellen, how old is your Father? We have a member here, flatlander, who had similar problems for a lengthy period. I hope he may see your posting and respond. I'm no expert, but I think a second opinion would be a good idea and I would have thought a urologist would be more appropriate than a nephrologist at this stage.

    I'm in Scotland so can't help re doctors in your area but I strongly recommend that you join the KIDNEY-ONC list and put the same question there. You are certain to get a lot of useful replies from that source.

    Hi there, thanks for your
    Hi there, thanks for your comments. Where do I sign up for the kidney list serv that you referred to..
  • foxhd
    foxhd Member Posts: 3,181 Member
    #4
    maryellenatl said:

    Hi there, thanks for your
    Hi there, thanks for your comments. Where do I sign up for the kidney list serv that you referred to..

    long time
    Maryellen, that all seems like a long time to me. I would be under the impression that the Dr. expects nature to run it's course and your father will improve. However, With this much time gone by, I think it is time for a second opinion. Especially if he is missing something. A follow up will be very cost effective. I would recommend going to someone affiliated with a different hospital to avoid any conflict of interest.
  • NewDay
    NewDay Member Posts: 272
    #5
    foxhd said:

    long time
    Maryellen, that all seems like a long time to me. I would be under the impression that the Dr. expects nature to run it's course and your father will improve. However, With this much time gone by, I think it is time for a second opinion. Especially if he is missing something. A follow up will be very cost effective. I would recommend going to someone affiliated with a different hospital to avoid any conflict of interest.

    Hi Mary Ellen,
    I agree with
    Hi Mary Ellen,

    I agree with Tex that you may want to see a Urologist. I am seeing a Nephrologist for ongoing management of my remaining kidney, but I see your father's problems as being complications after surgery and I assume it was a Urologist that did his surgery. I also agree with Fox, that I would see someone at a different hospital. I think doctors hesitate to criticize a colleague's opinion, but that loyalty often does not apply across different hospitals. My Urologist was Dr. Pattaras at Emory and my Nephrologist is Dr. Knowlton. He practices at Northside and St. Joseph. I hope this clears up for him soon.

    Kathy
  • pjune127
    pjune127 Member Posts: 127
    #6
    I live in Atlanta
    I was diagnosed in May of 2011. I was not comfortable with the surgeons here (I needed a complete nephrectomy of my right kidney and my vena cava was involved) and thankfully went to Duke for treatment. I had a urologic oncologic surgeon and a cardiac surgeon do my surgery in NC. I currently see Dr. Thomas Seay at Atlanta Cancer Care. He is an oncologist and recommended Dr. Greg Knowton if I needed a nephrologist. Right now I haven't needed one, but he is who I would contact. I highly recommend Tom Seay if you have the need of an oncologist.

    Feel free to ask me any questions.

    I wish your dad the best!

    Paula

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