Successful prostatectomy on transplant recipient with negative margins - radiation?

lew_in_marietta
lew_in_marietta Member Posts: 14
edited March 2014 in Prostate Cancer #1
I'm 58 and had a kidney transplant 5 years ago that is still working well. Early this year, I was diagnosed with Gleason 9 prostate cancer. One doctor told me I had to quit my drugs, reject my kidney, and go on dialysis so my body's full immune system could fight the cancer. Another one disagreed completely. I did a lot of research but couldn't come up with much info on prostate cancer and immuno-suppressant drugs.

I had a robotic prostatectomy 2 weeks ago. My biopsy showed a Gleason 9 but it turned out to be a Gleason 7. There was "extraprostatic extension" but "negative margins." My surgeon was ecstatic and said it couldn't have gone better and "we got it all." Still, he is recommending radiation treatment.

I've read that radiation following a prostatectomy with extraprostatic extension and negative margins may help with psa scores but it's not clear it increases lifespan. I do know radiation has a chance of damaging my transplanted kidney, and that WILL effect my lifespan as well as quality of life, so I'm not sold on it yet. Still, I don't know what effect my immuno-suppressant drugs will have on my future prognosis without radiation now that they "got it all."

Sorry for the long winded preamble. I'm seeing a radiation oncologist in 5 weeks at my follow up and want to have as much info as I can when I talk to him. Any feedback would be greatly appreciated.

Lew

Comments

  • chitown
    chitown Member Posts: 90 Member
    #2
    One thing at a time
    Lew - First of all congratulation on successful surgery, I got mine june 15.
    Give yourself 6 week to physically and mental recovery before worrying about the next steps. All things considered you have all things going for you. My suggestion is to find an oncologist that has no vested interest to advise, find a support group you can go to get other patients viewpoint, and most of rest and relax!
  • lewvino
    lewvino Member Posts: 1,010 Member
    #3
    Lew...Welcome to our forum
    Lew...Welcome to our forum and glad you are on the healing side now. Having the Gleason 7 is good news compared to the Gleason 9! Also as you know the negative margins are also a good sign. I had davinci in Aug. 2009 Gleason 7 and a positive margin. So far my PSA has been <.1 (which is zero).

    I can not give you any recommendation on if you should start the radiation but I would think that it would be 'targeted' to avoid the Kidney but I'm not a medical Doctor so of course that would be a good question when you meet your oncologist.

    You might also want to check out healgingwell on the web and their prostate cancer forum.

    Your name is listed as lew_in_marietta so does that mean you leave at or near Marietta Georgia? I'm just up the road in Chattanooga Tn area.

    Keep us posted on fighting this and good luck.

    Larry age 55
  • gkoper
    gkoper Member Posts: 173
    #4
    Radiation
    Lew-------I had Davinci 14 months ago. First PSA @ 6 weeks was 0.3. By late Sep. it was 0.7 (doubling). A CT scan found a suspect area ( very small) so I opted for IMRT. I finished 37 treatments just before Christmas. My first post radiation psa was 0.3. The last one 3 months ago was 0.1.
    My next test is in Oct.
    Since you are only a couple weeks out & won't get another psa for about a month I would hang loose. Radiation is no walk in the park------though I had no significent side effects. A fast rising psa results is the signal. Hopefully you will be in the ZERO club.
    Cheers,
    George
  • Kongo
    Kongo Member Posts: 1,166 Member
    #5
    Welcome
    Lew, welcome to the forum and I'm so sorry that you're facing these difficult decisions on top of all the other issues you must deal with. As you've already seen, the regular posters here will provide a lot of empathy and support as you deal with this prostate cancer that's now entered your life.

    You really have an interesting case and as I suspect you know from your studies to date that there isn't a lot of research out there that will be of much help in addressing PCa AND the consequences of your organ transplant and immuno-suppressant drug regimen. I'm glad you didn't take the recommendation to go off the drugs, reject the kidney, go on dialysis, treat the cancer, then look for another kidney donor. I'm not a physician but that just seems like a bridge too far...perhaps a valid clinical approach but one that fails to accommodate the needs of the patient. It seems to me now that you've successfully put the prostatectomy behind you that priority one ought to be to fully recover for the effects of surgery given your compromised immune system before dealing with follow-on treatment options.

    As you know from your previous research, your post RP pathology with the extra capsular extension suggests a strong liklihood that they really didn't "get it all" despite the optimistic view of the surgeon. I suspect that is why he wants to get you into follow-on radiation as soon as possible. The radiation isn't about keeping the PSA down...PSA doesn't kill you...cancer kills you and the PSA is just an indicator of how the cancer is advancing when you no longer have a prostate. The faster and harder you hit any residual cancer the better your chances of a long and happy life and there are several studies that show the efficacy of a post RP IMRT protocol. Having said that, you don't want to be one of those who died by other means because it somehow interfered with your kidney functions.

    While I too would be concerned about radiation and potential damage to my kidney, the techniques for IMRT today are very, very accurate and they can deliver the high dosage necessary to aggressively treat any residual cancer without damaging other organs. You may want to Google Novalis as a new steroscopic technique that can do this.

    As I am sure you are well aware of at this point, you are really an outlier and there's not going to be much medical body of knowledge on your situation that you can refer to to help make the right choices. Some of your doctors will feel the kidney will take priority, while others will want to pull out the stops to treat cancer. You have to find someone who can balance both of these conditions and look after you as a patient and your overall quality of life. Ii hope you find this doctor soon. Like you did before, your gut feel is probably your best indicator about what's right for you.

    I really wish you the best in sorting all this out. Please keep us posted on your progress.

    ============================
    Age: 59
    Dx: March 2010
    PSA @ Dx: 4.3 (Latest PSA = 2.8 after elimination of dairy)
    Gleason: 3+3=6 (confirmed by second pathologist)
    Biopsy: 1 of 12 cores contained adenocarcinoma at 15% involvement and no evidence of perineural invasion
    DRE: Normal
    Stage: T1c
    Bone scan and chest x-rays: Negative
    Treatment Decision: CyberKnife radiation treatment in June 2010. Side effects: None
  • lew_in_marietta
    lew_in_marietta Member Posts: 14
    #6
    lewvino said:

    Lew...Welcome to our forum
    Lew...Welcome to our forum and glad you are on the healing side now. Having the Gleason 7 is good news compared to the Gleason 9! Also as you know the negative margins are also a good sign. I had davinci in Aug. 2009 Gleason 7 and a positive margin. So far my PSA has been <.1 (which is zero).

    I can not give you any recommendation on if you should start the radiation but I would think that it would be 'targeted' to avoid the Kidney but I'm not a medical Doctor so of course that would be a good question when you meet your oncologist.

    You might also want to check out healgingwell on the web and their prostate cancer forum.

    Your name is listed as lew_in_marietta so does that mean you leave at or near Marietta Georgia? I'm just up the road in Chattanooga Tn area.

    Keep us posted on fighting this and good luck.

    Larry age 55</p>

    Yes, I'm in Marietta, GA.
    Yes, I'm in Marietta, GA. You say you had positive margins. Did you have radiation after the surgery? Thanks for the encouragement.

    Lew
  • lewvino
    lewvino Member Posts: 1,010 Member
    #7
    lew_in_marietta said:

    Yes, I'm in Marietta, GA.
    Yes, I'm in Marietta, GA. You say you had positive margins. Did you have radiation after the surgery? Thanks for the encouragement.

    Lew

    lew...no so far on the
    lew...no so far on the radiation. Doc is keeping an eye on the psa and if I hit .2 then I will start radiation. So far so good. Aug. 15 will be one year post surgery.

    Larry

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