Devastated partner52 gleason9 t3b diagnosis

Hi Jt,had the same feelings and close to same diagnosis as your oh,10 biopsies all positive,gleason of 7 and 8 t3b.localy advanced, had the hormone tablets for 4 weeks, had the 6 month injection 1 month ago decapepril,in the 1 month my psa has gone from 31.5 to 9.2,so for me its hormone then rt,i am coping with the hormone really well,. all i have is hot flushes mainly through the night and thats all.going back to work on monday on phased return I'm a hgv driver at royal mail.i was getting short of breath thinking it was side effects but turns out i have emphysema, and border line diabetic, then found out on friday i need a turp op before the rt,but as i say I'm getting on with my life and my wife Jacqui and daughters are very supportive, the help out there is amazing, the help on here is amazing. xxx

J.t, your husband's situation is pretty much identical to mine, I was diagnosed back in May, Gleeson 9, T3b, locally advanced. I started on Cypretorone Acetate before having my first Prostap Hormone injection. I had a bit of a reaction that gave me a nasty rash but it cleared after I stopped taking them! My PSA was 54.7 and came down to 1.9 after 8 weeks. I have just started 6 cycles of Chemotherapy after long discussions with the Oncology team. Not pleasant but hopefully it will help make the HT even more effective for the future. 

I was and am pretty philosophical about the whole situation although initially the diagnosis hit me like a truck! Same was true for my wife, I think she was even more devastated than me as she has always been the eternal optimist! We have found that talking it through and being honest with each other about what we are thinking and feeling has worked well for us, but then we have always had that kind of relationship so it has been pretty straightforward for us. If you can encourage your OH to talk then I am sure it would help but I know how much of a challenge that can be and some people deal with things in their own ways.

It always sounds easy to say but, try and remain positive, there are so many of us at different stages of the same journey. I have benefitted so much from this site, reading other's experiences and advice, keep coming back and reading, yes, it is information overload at times but, rest assured, as you go down this route it all begins to make more and more sense and becomes much more personal to you and yours!

I wish you all the best for the road ahead.

I can just add that I was diagnosed Gleason 9, ten years ago with a much bigger PSA number and am still going strong at 74. Your husband's age is the worrying factor. I felt that I was in my prime in my fifties, an active sportsman still and plenty of get up and go, if I can put it that way! It will be much harder for you both than it was for my wife and me, so I do sympathise and appreciate the changes which you will have to face together and which will be very challenging. Nevertheless, I think it likely that a whole raft of new treatments will be available over the next decade which will transform your husband''s prospects. It is important to stay positive and keep battling the enemy. One weapon you have is fitness. Hormone treatment can induce lethargy and lead to the pounds piling on. Look upon those things as fellow travellers to your "enemy" and keep them at bay and life will be so much better for you both.

Good Luck

AC

Hi J.t
I'm in a very similar situation. OH had PSA test result of 302 at the beginning of July. We only got the scan(s) results on Aug 24 by which time I wanted to scream! His has also spread to the seminal vesicles. Of the prostate biopsies all 12 were positive, containing 80-92% tumour. Gleason score of 9 (4+5), grade 5, T3b N1 M1. So yes, it is in his lymph nodes & his skeletal torso scan is difficult to take in with mets widespread & some large. So he's already on some heavy pain meds. Seeing the Oncologist next Thurs, 28th, brought forward from Oct 18th! Yes, the waiting is the hardest. First for tests, then results, then the plan of action. For us everything has been 'in two weeks'. He's had his first lot of HT, inc Prostap, next lot due mid October.
The whole thing is a waking nightmare & when we first got the PSA results I was utterly bereft, almost grieving & felt very alone. The guys on here have been brilliant. Even those whose journey has been different have just said hi & some days that has been enough for me to cling to. Btw, I'm 45 (too soon!) & my OH is 54. We have a 19yr old son who has just gone to university & a 17yr old in her 'A' Level year. I'm also partially disabled after losing a fight with a truck. The thought of losing him leaves me a gibbering wreck so I try to remember what stubborn b*ggers we are & that he is determined to see the kids graduate. Please feel free to message me if you want to talk. It's a daunting time for all of us but there's no way that you need to feel alone this.
Mel