Advice required about post RP radiotherapy

Ljewse Member Posts: 1

Hi there,

I'm the wife of a 45 year old so was diagnosed with Prostate cancer 16 months ago with a PSA 120 and a Gleason of 9. MIraculously the choline PET, bone scans and 3T MRIs didn't show that it had spread to other organs and he had an RP straight away by da Vinci robot. (And started Zolodex) Unfortunately he had a bowel injury and got sceptacemia, and therein followed a whole host of complications, including an ileostomy. You may have seen him raising awareness about Prostate cancer affecting men under 50 on Facebook in his pants, with colostomy bag and catheter in place - he reached about 25 million people with his message from England.  


He has had that ileostomy now reversed and has just finished 6 cycles of chemotherapy (docetaxel + prednisone) - tomorrow he has his scans for radiotherapy, as he did not achieve a clear margin (although lymph nodes were clear, vesciles were involved). His medical team believe in hitting this very very aggressive cancer with absolutely everything in their aresnal it would seem.  He currently has a PSA <0.03.

That's setting the scene really and would LOVE to hear from people who have had ALL the treatments and ask how they have got on.  For now though, he is facing radiotherapy of the prostate bed, what are your top tips for getting through it, how bad were the side effects and did you find ANY ways lf alleviating them?

Thanks so much for listening...I've already found many of these discussion topics useful!




  • VascodaGama
    VascodaGama Member Posts: 3,515 Member
    Proper healing should be assured before SRT


    I am sorry for the suffering you report. I am surprised that the scans were not practical in providing details of abnormalities, at least in the gland and its surroundings, in face of the high PSA, and now with the finding of seminal vesicles involvement. I wonder if you have obtained second opinions on those image studies by independent specialists. If you have not I would recommend you to do it now because these image studies will be important for the planning of the salvage radiotherapy. Please note that radiation is applied only once at the same area (there are possibilities in perforation of organs) so that its planning should be properly defined based on proper exams to assure the best shot.

    I see his doctor's suggestion in treating aggressively this Gs9 cancer as based on "guessing". Surely, the actual facts lead to think that any existing cancer (if existent) would be localized. One knows that PCa commonly spread out of the prostate via the seminal vesicles. This finding justifies an attack of RT in the prostate bed. However, in regards to the positive margin finding; this alone does not assure an escape of the cancer. The margins next to the places where the gland has been detached (at the base close to the bladder and at the colon) always retract and are "reported" by the pathologist as existent. The PSA you report (0.03 ng/ml) though in remission levels (no cancer activity) may not be a true value as it may be under the influence of the Zoladex shot.

    After RP, salvage radiotherapy (SRT) should be the next step if cancer is still existent (recurrence verified). I am not that confident that an earlier attack throwing arrows in the dark (on guessing basis) will provide better outcomes. You husband should also be aware of the side effects of the treatment that will add to the ones he already have.

    Can you provide details regarding the timing of the Zoladex shot and its dose?

    How about the symptoms that lead to cancer diagnosis 18 months ago?

    Whatever you chose do it only after proper healing of the area. I also would recommend your husband to have a colonoscopy done before RT to check for existing ulcerative colitis. These would prohibit an attack of radiation to the affected areas.

    In this link you may read reports of survivors about their RT experiences;

    Best wishes in his continuing journey.

    Merry Christmas


  • Daeehasan_R
    Daeehasan_R Member Posts: 1
    suffering from pain

    My uncle diagnosed for PS c and treated with Radiotherapy and drug almost 1/5 year before but  has pain and loss of control in his legs. He was very active before treatment and now  after finishing all treatments he is not comfortable and has pain and suffering of weakness in his legs. Also he got an amboli in one leg . He had been scanned for several time  for metas.. fortunately was Neg. He has passed one month in rehabiliation center also. But at the moment  he is not happy and walk a little with walking aid. He has been checked for neuropathy but no cure.

    I would like to get a response from anyone who could give us a suggestion for  treatment of his pain.


  • VascodaGama
    VascodaGama Member Posts: 3,515 Member
    edited October 2019 #4
    Other health issues could be behind the problem


    Welcome to the board. The leg problem could be a cause of PCa treatment or many other things. He needs firstly to identify the cause and then chose the therapy. Pain could be due to infections from arthritis or lymphedema swelling or from a fall. Once he knows the cause he can follow treatment instead of taking a simple pain killer. Fatigue is a common effect from PCa treatment. Typically it vanish once the treatment ends or the symptom continues but with lesser intensity. Age and other illnesses also matters. I wonder if he has any other health issue. What is his age?