Very scared: Gleason 9 prostate cancer

Hi all

I saw my specialist last week and he informed me that I had level 9 Gleason prostate cancer. I am awaiting a CT scan and then a bone scan. I am in no pain whatsoever at the moment and I consider myself quite fit playing golf 4 times a week and walking with my wife and dog the other days. I am 60 years old and am quite scared for my future. I am not scared of the pain, just not being around for my wife and 2 grown up children.

Can anyone give me hope for optimism as all I have seen about level 9 gleason is not great.

  • Good evening

    That sounds very positive. Further monitoring is quite normal but just see how things go and take each day in a positive frame of mind. 

    Enjoy Christmas and the new year with the family.

    Best wishes

    Ron

  • Thanks Ron, 

    You too, I hope we all have happy and healthy 2020!

    Peter

  • Good evening Billygoatt

    I am no expert so always best to speak to the consultant for that first hand knoledge and obviously farmiliar with your particular case.

    My understanding is the Gleeson is based on two figures.  2 x 5 added together is a maximum 10. The higher the figure, the more serious.  Having said all this however. there is always hope and one needs to be positive. As advised, mine was 4 + 5  =9   Given time, and thankfully a brilliant NHS it seems to be OK at the moment.  Stay positive and enjoy the good things in life.

  • My Husband has a Gleason score 9 he was Diagnosed 6 years ago and hes on hormone therapy,his cancer is locally advanced ,hes doing well and walks the Dogs 3 times a day,he  complains about the hormone therapy as it makes him sweat, overall hes doing very well and he just gets on with a normal life because that's all he can do,he doesn't really think about his cancer or worry about it hes 69yrs old ,he does have the odd day when he feels exhausted but he puts it down to walking the Dogs as he walks miles yet I offer to walk them and he wont let me,he enjoys being out in the open as he was a tree surgeon so far everything is fine and we dont talk about it because it's not worth worrying ,,he gets on with his life as though he hasn't got this prostate cancer ,it doesn't hold him back from anything,when he isn't walking the Dogs hes out in the garage repairing his old chain saws .

  • Thank you for this response. I really needed a person with a similar cancer to mine to give me some hope for optimism. It`s my birthday today and it`s my mums funeral tomorrow, I really needed this lovely story and tale of hope and optimism.

    Thank you so much

    Mick  (arry4424)

  • My psa was 44 gleason score 9 stage 3b in 2018 been on hormone therapy and had radioterapy in2019 .

    Psa now 0.11  keep your chin up !

  • Hi I wanted to ask I am on regular blood testing as it was found my PSA has fluctuated between 3.8 to 4.3 I have no symptoms, i did have a MRI and they said I had a benign enlarged prostate 3 times the size 56g .They only want to see me if it reaches 5.0 on my PSA what is the course of treatment when it reaches this level , I am 54 years old

  • Garfy,, it's possible you could have two options,,. 1 have prostate out,  2 hormone therapy and radiotherapy. Remember I'm no expert, there's two gents on forum each one had one of the above years ago and still on the go. Good luck........ Billy 

  • Hi all, thought I's add my own story. I was diagnosed Gleason 9 (PSA 36) in Jul last year. MRI and CT were clear, so came as a surprise. I'm 47 years old and in the RAF - pretty fit and have stayed that way for years! Surgery to remove the prostate took place in September and I'm now getting my fitness back. I had hormone treatment to supress the testosterone but now coming off that to see how successful the surgery was - PSA test due end March.  My surgeon threw the kitchen sink at my treatment - meaning I can't do things I used to be able, but I am hugely positive and hope that I can inspire others. My 12 year old daughter has Down's and I didn't think life could throw anything more at us - it did!! 4 tours of Afghanistan and Iraq as an RAF chap - and now this!!!  Technology and scientific advance nowadays is amazing - have confidence, please!! I have no idea where my journey will conclude, but I am thankful for what I have had so far and I will keep on giving. Join me and keep smiling. 

  • Hello 

    First of all ,please forgive me my rusty english,I try to di my best,but it's no easy when it comes to my language.

    In short,anyway,recently I read  thousands of opinions of us who suffer of prostrate cancer,in general,most of us had a completely different experience with that kind of cancer. E.g.,I've  for 4+3=7 (Gleason socre),PSA 6.9,and after biopsies,MRI,I'm indicated to do a bones scan as well. I'm so scared as well.Even it is less than 8-9-10 in Gleason,we scared. That's probably normal human's nature. There's no reason to pretend that we are heroes  we are so strong and we never crying,it's agains of  humanity to pretend in those circumstances. 

    I wish you all the best and kept my fingers crossed  for you 

     

    Best wishes and regards