Prostate Cancer Gleason 9

Hi all, 

My uncle has been diagnosed with high risk, locally advanced prostate cancer. His Gleason score is 9, it is T3b, and his PSA is currently 132. 
In terms of spread, he is M1a - it has spread to lymph nodes and nerves but not to bones or organs. Doctors have recommended chemotherapy and he is currently on hormone therapy. He is 51 years old. 
I just feel very scared and I would really appreciate speaking to someone who has had prostate cancer, especially of a similar score/category. I want to understand how "bad" this is, and if I should be hopeful or not. While I am probably looking for reassurance, I also would like to know the reality of what to expect. 
So many questions run through my mind...does he only have five years, is this terminal, can be ever be in remission? 
 

I would really appreciate the stories of people who have been through this. 
 

thank you so much 

  • Hi qwerty don't forget i had it on one lung, it depends on how much, a small amount chemotherapy should get rid easily if i remember right his lungs were clear earlier so it can't have been there long so a good chance to clear it up. Please try to be positive you seem to think worse case every time, 

    Hope you are looking after yourself as well. 

    Billy xx

    P.s from being diagnosed to start treatment i was four months, that includes cancer in the lung. 

  • Oh ok...it's in both lungs and I think has spread quite a lot. I haven't been able to look at the report yet but been speaking to my sister who has. The earlier scans didn't cover lungs - he only just had the scan that looks at lungs, which is why we didn't see it before. 

    thanks for your reassurances. I suppose because this is all so new, it just frightens you and your mind goes to the worst. 
     

    thank you - I hope you are taking care of yourself as well and your wife is doing ok xx

     

  • Hi were managing OK. Just trying to figure out why they didn't do a full body or at least a torso scan it would have told them everything. Hopefully cemo will still work. Keep positive please.

    Please let me know how things are going thinking of you both. 

    Billy xx 

  • They did do a full body one before, but I think this doesn't show on that one until a specific lung one is done? I'm not sure myself, but will ask. 
     

    Thanks Billy, I'll keep you updated. Please also keep me updated on your own health. Am also here for you to talk to if you ever need it.

     

    thank you x

  • Morning I was diagnosed with stage 3 advance prostate cancer with a psa of 120 I had prosap hormonal injections and radiotherapy my psa dropped to .6 after a year it went up to 1.2 and was doubling up every 4 weeks and my psa went up to 6 the oncologist has prescribed zitaga and persodene I was at the hospital last week and my psa has come down to 4 they are not concerned so I just feel I am getting the best treatment and what will be will be from all the scans it has not spread I know there is no cure and they can only do the best for me

    David

     

  • Hi David. I take it you have a medical reason why they can't remove your prostate if as you said it hasn't spread.. 

    Billy 

  • The cancer has broken through the prostate wall and it never came up to remove the prostate so they must have had some reason for not giving that option I have had numerous scans so many I have lost count so I presume it has not spread I have full confidence in the oncologist 

    The tables I get I think is only available in scotland and I suppose each oncologist treat it differently it was prescribed by the professor sorry hit wrong button as I have replied in capital letters 

    David 

  • Thank you David for sharing your story. May I ask please when you were diagnosed? 
     

     

  • Hi Billy, 

    Just thought I'd share a little update we got today. Blood test results show his PSA has now dropped to normal levels from 132.3. So that shows that hormone therapy has had an effect. Chemo starts on the 18th so fingers crossed. 
     

    I watched Bill Turnbull's documentary on Channel 4 called 'Staying Alive' about his life with advanced prostate cancer. It was super helpful and heartwarming. Have you seen it? It's on 4oD in case you want to check it out :)

    How are you doing? 

  • Hi qwerty glad hormone therapy is working means cemotherapy can do a better job.. Didn't see that program I'll have a look thanks. Glad it was helpful to you. 

    I'm same as usual, thanks just plodding on.

    Really glad it's working well bet your relived. 

    Billy xx