Advanced prostate cancer

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Hi , my name is Martin and I’m 56 years old .

This is my first post but just wanted to hear from people in a similar position to me.

I had a radical prostatectomy back in June this year following my diagnosis of Gleason 9 cancer that had broken out of the prostate and had started to spread to the seminal vessels .

The operation went well and I was recovering and found I regained control of my waterworks quite quickly , the consultant was happy with the  margins on everything that was removed so all was looking positive the only negative was they upgraded my Gleason score to a 10 !

 I did my 12 week PSA test and this had a reading of 0.605 which shows there were still some cells around , following a PSMA pet scan it showed a cell had been found on my T6 vertebrae on my spine and was told my cancer can’t be cured . This was obviously devastating news for me and my family to hear , I have now started hormone tablets and monthly injections and will see someone from oncology in January.

 I am really struggling at the moment with coming to terms with this and the uncertain timescales they give you as I know everyone is different but would love to hear any positive stories from people who are going through the same journey as me .

  • hi martin.  I'm 59 and got same only a little bit worse.  if you read my bio it may give you a idea of what's to come.  I'm currently 11 months down the line and seem to be doing ok. regards dale 

  • thanks for your message, any information I can get will help me as google is just stats and I know everyone reacts differently!

    I hope all keeps going well for you Fingers crossed tone1

  • Hi Martin, and welcome to somewhere you hoped you'd never be, I'm also Gleason 10 with bone mets, diagnosed nearly 4 years ago at the same age you were my friend, I'm just home from my 8th holiday of the year, 100% independent, and with mo8to come. Can you do yourself a big favour and steer clear of Dr Google, he'll only take you down the darkest roads, stick to trusted sites like PCUK, Macmillan, NHS; and the good people on here, I'm also not curable; but not curable doesn't mean not treatable, and for a long time.

    Eddie 

  • Hi Eddie , good to hear some positive news 

    I like the logic of not curable but doesn’t mean not treatable , thank you for your reply

  • Your welcome Martin, 

  • An excellent post by my friend  - and he is so right. Yes, I’m T3a, but I understand his advice completely. Indeed, having this cancer (and some aggressive treatment in an attempt to cure) I have definitely changed my outlook on life in general and I , too, intend to squeeze every bit of enjoyment out of it whilst I can.  AW

  • Hi Martin, my husband was diagnosed with Gleason9 incurable PC 10 yrs ago. He's still here thanks to HT injections, which he tolerated well and has been able to lead a normal life all that time.  Good luck with your own journey.

  • Agree with how you view things in life , 

    keep fighting 

  • Thank you for your story , it all helps to give everyone hope as I feel we are very much left in the dark at times

  • Hi Martin ( ), sorry I am late to the party but you have already had lots of good replies.  As another ‘incurable’ I know what a shock it is to receive the diagnosis, but plenty of us have fairly active lives with this diagnosis.  Now you are on HT hopefully there is no panic, but a question I would want to ask my team next time you meet, is ‘can you zap the T6’.  It may not be possible but personally I would want to know.  My oncologist was doubtful when I had a met in my sternum, but she brought in a clinical oncologist who specialised in RT who managed to zap the little bu..ers.

    Best wishes, David

    Please remember that I am not medically trained and the above are my personal views.