Nice to hear things are good have just been told I have Gleason 4+5=9also gone to lymph node, I am on hormone and now waiting to see the oncologist and then chemotherapy .

Not knowing what to expect for the future

Hi Ron

Hope you are keeping well, just an update on my own situation, like yours Gleason 9. The latest blood test showed that PSA is now undetectable, have to retest in 2.5 months as normal.

best wishes

Peter 

Hi Peter

Appologies about the delay in replying.

That is GREAT NEWS!  Very pleased for you. I do think a positive mind is a great helpin these matters.

I do hope your position improves over time.  

Best wishes

Ron. 

Hi everyone 

This is my first post on this forum.  My dad has been diagnosed with prostate cancer.  He was diagnosed approximately 2.5 - 3 months ago I think?

When I first heard the news I was fairly relaxed about it, I decided instantly there was no point in worrying and he would be fine.  Now I think maybe I was in denial for a while because I didn't want to think about it so keeping myself detached was the best strategy.  Also I generally don't tend to worry much about health things myself.  But since he told me he was Gleeson level 9 yesterday, now I'm feeling quite panicky. 

He told me yesterday he has Gleeson level 9 out of 10 and he is extremely scared.  I had never heard of the Gleeson score before so I searched for it and came up with this thread.  
I want to find out more about what the numbers mean so that I can try and understand it better, as I think it will help me to personally feel more in control / less scared if I understand better what's going on.  

His PSA is 6.8.  Gleeson 9.  Apparently the tumour is on the edge of the prostate.  I don't know how big or how bad.  He was originally going to have surgery but has since decided against it.  He has had the hormone tablets for the first about 2 months, I understand this is to shrink the tumour or at least stop it from growing.  Now he has to have an injection once every 3 months (also hormone I think? To reduce testosterone, right?).  Then he will have radiotherapy for 7 weeks 5 days a week.  

He's extremely scared and I think because he is scared it's starting to worry me too.  I kept myself from thinking too much about it until now.  

Posting here to talk to others who have / have had similar, can you share more info with me if you understand what these PSA combined with Gleeson numbers mean?  Also what treatment route you went if you had a similar score.  

Hoping this will settle your mind in some way. My Dad was diagnosed with prostate cancer in 2012. It was stage 3 locally advanced, had spread to seminal vesicles. Gleason 9. Psa over 40. Negative margins. I remember the sheer terror that rippled through us all at the time. Everything I read about gleason 9 was not good. He was put on casodex initially for a short few weeks. Then he did 35 rounds of radiotherapy and has been on hormone treatment since. That's an injection into the stomach once every three months. He has responded very well to the hormone treatment thankfully. He has his bloods done twice a year and visits the hospital also twice a year but they are happy with him. His psa  is still under 1. As a family we continue to pray. He takes a capful of pomegranate juice most days as we read that it's good for prostate cancer. From time to time he seems to find himself going for a wee a fair bit. He gets up twice most nights to the bathroom. Remain hopeful. I hope this helps in some way. 

Hi Hopeful100   :happy:

Thankyou for replying!  Really appreciate your post!  

Thanks for sharing your dad's story so openly.  If it's OK and not too emotional for you, would you mind telling me what sort of side effects did your dad experience from the treatments?  The radio and the hormones.   And what kind of support from family - emotional or otherwise - if any, helped him?  How is his health now after 8 years?  Also would you mind telling me what age he is?  My dad is 72.  

TIA :love: 

Hi 4leafclover.

Alot of specialist play around with the gleason score. 

Mine was 8 psa 1581 stage 4, diagnosed Feb 2016, prostate gone to lymph nodes, spine, ribs, pelvis and a lung on permanent hormone therapy and cemotherapy when neaded. Classed as palliative care.

If contained it should be 7 or bellow once it gets outside the prostate numbers increase depending how far it's spread..

Good luck with your father's treatment. 

Billy 

Glad to help. Dad is 82 now, in good overall health, very active thank God. The hormone treatment has suited him. Rarely gets a hot flush. The only issue he has is that he gets chest infections now and then which require strong antibiotics to clear. He feels the cold alot and that's down to the  after effects of the radiotherapy. He lives a full and active life. We are so grateful that everything has worked out so well. I would try to ignore the internet if you could because everything we read suggested that the hormone treatment stops working within 2 years. Even if it does I think he could go on second line hormone treatment. Then theres chemo that could be tried. There are loads of options, stay positive. Hes a very positive person and that has stood to him. Best of luck. 

HI,

Just read all the posts relating to your post.

Let me give you some encouragement.

In March 2013 after all the rafts of tests you have been/going through I was given a Gleason 9 score and an 18 month terminal diagnosis.

I went through hormone therapy and 40 x external beam radiotherapy. 

I developed a hatred of my prostate, I swore at it , cursed it, told it it wouldn't beat me and I was determined it wouldn't.  It hasn't. 

My ongoing treatment is regular PSA testing with referral back to oncology if my PSA goes above 2.

I've learnt to adjust my life to combat/cope with the constant exhaustion.

I was 55 when I was given a terminal diagnosis.

My message to you is to keep a positive mental attitude. I, for one firmly believe it has helped me through that dark period of my life.

Never give up giving up.

Ps my last PSA test was 0.09.

Best wishes

BadboyP