History of my journey

First diagnosed in December 2005. PSA 760, extensive mets and given 18-30 months to live. Changed oncologists and much more positive outlook. Zoladex for five and a half years, TRAPEZE trial - docetaxel and zoladronic acid. Abiraterone (had to come off for toxicity reasons), Enzalutamide and now cabazitaxel.

Through my involvement as a trustee with Tackle Prostate Cancer, I have been a patient representative on NICE committees foe abiraterone (pre chemo and chemo naive) enzalutamide (pre chemo and chemo naive), degareix, radium 223 and successfully appealing the withdrawal of cabazitaxel from the CDF being it passed for mainstream NHS use.

7 Replies

  • Hugh, as the wife of a prostate cancer sufferer, I just wanted to say well done - you must have worked hard to defy the doctors and get to this stage, so all credit to you, and lots of good luck wishes for the future.

  • What a fantastic story. Where is your hospital? I am paying for a consultation at Royal Marsden this Wednesday and have to travel from a very long way away. it takes me 6 hours to travel to my son's who lives closer to London and then an hour to London from there by rail. I do not feel I have been given the information I need at any step in this process and have never been able to really talk anything through with an oncologist - I saw a radio onc. back in July but basically she was only interested if I was definitely going ahead with IMRT and the main reason for the consultation was to have scans done to do the treatment planning as that is what I had been called forward to do at this appointment - however due to the diagnosing urologist not doing blood tests and my surgery being overworked and understaffed the blood tests had to wait a week and then we had to wait a week for the results and then eventually have the hormone injection a week after that so the hospital thought i had been on the hormone therapy for over a month when it had actually not been much more than 2 weeks! You will see from my posts that most of my journey thus far has been a total mess. So glad to have found this forum and get other people's experience so that I can get the information I need.

  • Hi Des

    I am being treated at QE Birmingham. Where do live? It is important to be practical, 6 hours travelling might become difficult as time goes on.

    There is no need to pay for a private appointment, all you need is a letter from your GP.

    Best of luck to you

  • If I were a candidate for the treatment I would stay with my son just an hour from London. As it is the Docs believe the cyber knife treatment would leave me with worse side effects than conventional IMRT due to my pre existing conditions. Also I live in Wales and our NHS is devolved so we are unable to move out of our area to have treatment so that is why I paid for a private consultation.

  • Has anybody suggested da Vinci robotic surgery? I believe it is now available in Cardiff

  • I had a psa test back in July 2015. That was 5.0 Rectum exam showed small lump on prostate. MRI, CT and full bone scan were all negative. BUT Gleason was 8 (one core was 5+5. Opted for Da Vinci. Had that Nov 2015. Prostate came out without leakage. Bag for 8 days, pads for 6 weeks. Since then psa has been 0.01.

    My advice is do as the Urologist suggests. My Op was fine, no pain at all and just 1 day in hospital. BUT we are all different and treatment will vary for each one of us.

  • Telboy as I have said previously when I read your story I wish I could replicate your journey. Unfortunately it seems I cannot but it is great to hear of someone doing so well. You obviously had a great surgeon and that is most important. Whateer treatment plan you decide on make sure the person and the team delivering it are some of the best.

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