Options when adjunct or salvage radiation can't be used?

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  • crw41atacc
    crw41atacc Member Posts: 17 Member
    #22

    My Cystoscopy was fine. no findings.

    The imaging center performed a CT w/wo contrast. A CT urogram was supposed to have been performed. That type of study is good for the kidneys and does visualize the ureters, but doesn't nearly visualize the ureters as well as a CT urogram.

    I am going to have to speak to urologist - order was correct, not sure where the problem happened.

    I am not sure what to do next. My decipher test is pending (sounds more academic that anything else).

  • VascodaGama
    VascodaGama CSN Member Posts: 3,732
    #23

    Hi again,

    It is pity that you haven't continued posting in your first thread. Those reading, in particular the beginners, would gain from knowing details of your case and history.

    You are doing well in getting those exams correctly and tests before going through a final decision.

    Though your radiation of 43 years ago being of insignificance, the Gy of that time will be always taken into account no matter in what type of salvage RT you are going to choose, if any.

    Another topic for discussion with the radiotherapist is the findings of cribriform type of cancerous PCa in your prostate specimen. These, if being the cause of the biochemical failure, require higher doses according to clinical studies.

    The decipher test will help in your decision on the other options of treatment apart from the radicals. I think that you should consider consulting a medical oncologist specialist in PCa cases. Hormonal therapies alone or concomitantly with chemo may be worth of a thought.

    You are an important member of this forum. Your medical knowledge is of great value. Take the chance and be the advocate of yourself. Talk to your family too.

    We need luck in this journey.

    Best wishes for this difficult paragraph in your life.

    VGama

  • Clevelandguy
    Clevelandguy CSN Member Posts: 1,316
    #24
    https://csn.cancer.org/discussion/comment/1721486#Comment_1721486

    Hi,

    As you probably already know both the Cleveland Clinic and University Hospitals have excellent cancer centers. I had my Prostate removed at UH Siedman cancer center, University Circle. I think both also have Proton machines, I know UH does. Good luck…….

    Dave 3+4

  • crw41atacc
    crw41atacc Member Posts: 17 Member
    #25

    Bascially, where I am at is:

    • N1 direase along left internal illiac chain
    • last 2 PSAa 1 month apart were 0.40 and 0.39, likley higher now
    • Radiation not realistic - does of 70gray would be needed to treat bed/nodes. My prior rad TX earlier in life was 30gray - so the danger of extreme toxicty to sigmoid/rectum/bladder far outweighs the risk. there structures cannot get more than 45 gray in a lifetime. There is high risk of tissue death, fistunal formation, perforation etc.
    • There was some talk of possible SBRT to that node only, opinion waiting

    A local comminttee met and suggested consult for SBRT. Medical oncologist said it might be worth trying, but likley won't work and ADT/aberaterone/pred in near future. Decipher score was 0.9/1. Gleason 3+4, but 40% 4 with cribiform present

    Here are my thoughts and frustrations:

    • MOs tend to be evasive and avoid telling what they really think. From what I can tell - most people on ADT/Aberaterone stay castrat sensitve for about 3 years, average survival 5 years? Can I know where I am on the bell curve of survival, no - could be less or could be more.

    Is salvage lympadenectomy even an option - no sure, will try to find out. At 0.4 chance of micromets beyond the node is high.

    I am extremely concerned about quality of life on doublet hormone suppression. I am in fairley good health. From what I have read the side effects can range from intolerable to not so bad - everyone is different.

    When I had testicular cancer as a younger person, I had hope - that got me through it and helped me complete many life goals.

    Right now, I don't feel as though I have any hope and I am having a hard time particularly when i find that I wake up in the middle of the night and my thoughts and worries prevent me from getting back to sleep.

    Sorry for the rant. I have too much knowledge for my own good. I am reliving the medcial trauma from my past.

    Her are some focused questions, asking for inout (thanks in advance):

    1. Has anyone had a salvage lympadenectomy?
    2. Quality of life on suppression is significant ?
    3. Sources to cope with a terminal diagnosis?

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