Communication is so hard isn't it? After a lot of telephoning around and talking to nearly everyone I could - except my urologist who is doing biopsies today at a different hospital. It seems that the hospital should have done Liver function tests so that has put me back a few days because the GP had to organise them so had to wait for a phlebotomist appointment and then wait a week for the results - they came in yesterday and were fine btw. My urologist according to his cancer nurse, would not prescribe casodex tablets for my cancer whether it was T2 or T3 though in his letter things are more ambiguous as he says he cannot rule out T3 and it says localised advanced prostate cancer would have casodex prescribed - well T3 in the Prostate Cancer UK leaflet is localised advanced prostate cancer. Most others would prescribe for T3 and some - according to my GP prescribe it regardless of what kind of prostate cancer you have. I should have had the injection last Monday but of course had to wait a week for the blood test results to come back and couldn't get that done until last Wednesday so they came back yesterday and are OK Then the surgery do not have the last letter which was waiting for me last night so had to get that to them and get it copied. Long telephone conversations with Prostate Cancer UK nurse and my GP and my GP has suggested that I go ahead with the prostap injection today and start taking casodex 2 days later - the reasoning behind this is that if I had a reaction to the Prostap then if I started taking the casodex and had the injection on the same day it would be hard to know which one had caused it and if I cancelled the injection today I would have to wait another week before I could get the injection again. The whole thing is a bu***rs muddle. I have absolutely no confidence in the system or anyone in it. The Prostate Cancer UK nurse said that once Radiotherapy started things would run smoother because you would be seeing the same people nearly every day of the week and they get to know you and so on but really I am not so sure. One thing I have learned today is that I have an appointment to see the oncologist on 27 July - another thing I am not happy about. How can you make an informed decision when you have not seen the main person involved in the treatment? By the time I see her I will have been on hormone therapy for 3 weeks or more so cannot really change my mind then. Still don't really know what to do but decided to go ahead with this plan from the GP as I don't want to waste any more time. As I said, absolutely no confidence in NHS Wales Prostate Cancer Service. Even though I understand that when I start Radiotherapy things will be different as I will always be going to the one hospital this has made me even more sure that I need to go to Prague to get Proton Beam Therapy. I have an initial appointment with them next Wednesday. I only hope that I am considered a good candidate for this treatment as the thought of going through more of this rigmarole has started to make me feel I don't want any treatment at all - even though I know I do.

Have a great day everyone, From a very pi**ed off Des.

6 Replies

  • ncbi.nlm.nih.gov/pmc/articl...

    Check this out Desanthony

  • Thanks Red Rebel. This is very interesting reading.

  • If you read my last post you will see that now most of this is a load of cwap anyway as had to have the 3 month injection! You wonder why so many people go private. How anyone older or without the help of someone like my wife could get through all this to start off treatment I do not know - and even then the NHS in Wales can't get it right!

  • You are more than welcome Des. I am in the same boat as you with this disease but fortunately I married an Italian woman and live here in Italy and I can say from experience, the Italy's health system is far superior than my own country England. Sad to say this. There are top world specialists in this field of medicine here, so keep in touch on here and if you need to see a specialist here and able to pay for a consultation, (mine is €350 this coming Wednesday) then let me know. I will tell you what advice he gives me to do, but I feel in my case it will be a full prostatectomy. My doctor who is a good mate of this specialist has already told me to expect this outcome from the consultation. Then it will be how fast I can get it done. Will let you know.

    Best regards


  • Thanks Jamie. Very kind of you. It is just the communication between everyone here. Everyone I would think - including the receptionist knew this would be my first injection so should have been a one month injection. Everyone that is except the nurse who was giving me the injection. The nurse who did the Liver function test should have noted this. The GP should have noted this and prescribed Casodex prior to the injection. It is just mad! I have now had 3 people tell me that once you get to the main hospital - a different one from the one where I see my specialist (!) everything runs like clockwork(?). Thank goodness for that! Would you believe that in my position? Two different hospitals and my surgery involved!

    Am glad now everything has started but still no confidence in anyone here. Have an appointment with oncologists team on 27 July. Going to Prague on Tue/Wed. For me - even though this treatment is expensive, I feel it is the correct way to go because of my other problems - after all what is money for?


  • I agree, if people can afford private health care, then this speeds everything up. The consultant I am seeing next Wednesday privately, has a 1 year waiting list going through the health system, just to give you an idea. It's money well spent in my opinion.

    I hope all goes well for you and I send you my sincere best wishes for an excellent outcome and recovery.

    Cheers mate


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