Hi tallroundman and welcome to the forum the club nobody wants to join, not sure but where you've put grade should that be gleason. I was gleason 8 stage 4 psa 1581 that was Feb 2016 been on palliative care since, there are two other gents on forum who have had other treatments thares [@woodworm]‍ and [@telemando]‍ hopefully they will pop over to help soon. Best wishes.....

Billy 

Hi TallRoundMan. Welcome to the forum

I had prostate cancer surgery back in 2010 and I'm still here to tell the tale!  I'm not a doctor, but then none of us are.  The rule is not to panic (difficult) and to try to gather as much information as you can about your case to help you come to the best treatment decision for your situation. 

Stage 2 cancer is pretty early and usually curable with appropriate treatment.  I'm not sure what you mean by Grade 5 prostate cancer.  Normally, prostate cancer is graded using the Gleason system, which is two numbers, such as 3+4.  The order of the numbers is important (3+4 is better than 4+3).  Sometimes the two numbers are added together and you're only told the sum, but when that happens you can't have a number lower than 6.  Hence my confusion. 

To be able to make a truly informed choice about treatment, you need to know your stage (such as T2a), your two Gleason numbers AND the order they come in, and a recent PSA blood test result. If you don't have this information to hand then you should be able to get it either from your assigned Macmillan nurse or even from your GP. 

Are you scheduled for any more test and scans?

Hi [@Billygoatt]‍ 

I was confused when I did a little hunting around so went back to my oetter copy from th oncology nurse and seem to have confused Gleason which wasn't mentioned. Nurse indicates it is a grade group 5 adenocarcinoma so don't think they are necessarilly the same thing. It is active and a lot of it - but I am still trying to understand the lingo. And psa scores are driving me nuts as mine is 9.3microgrammes/l.

And you are absolutely right - I wanted to be Groucho Marx but seem to have failed miserably [I don't want to join any club that would have me as a member!] 

@telemondo

@telemondo ​​​​​​​Thanks for dropping in and dropping some good news...do you get a badge for 10 years post surgery? Panic and concern as you say are not easy and all those questions of why me? what have I done etc take some controling but sure I will get there in time.

I was confused, as I noted to [@Billygoatt]‍ that I was confused when i did some digging around and ended up going back to my letter. It is grade group 5 adenocrcinoma high activity and high volume as opposed to a Gleason grade 5 - but only just started getting the language and the scores on the doors. 

Currently I am awaiting a bonescan which should be this week with the MDT team discussing the overall picture all beng well on Friday with plans a week after.

No badge I'm afraid - not even a tee-shirt.  

I've done some searching and found a page that describe the grade group. This is a new way of grading prostate cancers and I must admit I'd never heard of it before. But to be honest, the Gleason grades are confusing so replacing it with a new scheme is probably a good idea. There's a table near the end of the web page which maps Gleason grades to Grade group: link

It looks like a grade group 5 is the most mutated form, which isn't good news, but if the bone scan etc are clear then it should still be curable by some combination of hormone therapy, surgery, and radiotherapy.  The MDT will come up with the best combination for you, and you should probably just follow their guidance.  

Please keep us informed of your progress, because it will help us to help others. Indeed, I hope you become a regular on this forum.  And if you ever want to chat, we're all here. 

@telemando thanks for the link...saves me getting confused or confusing others. Maybe I just got unlucky...oh well in time I guess I will get better informed, less confused and be able to look easier at the family.

I got the bonescan appointment through today so i become radioactive for a few hours on Friday but that pushes the MDT back a week with the follow treatment discussion with the oncology nurse a week after that. Maybe that the op option, if available, may be in to March rather than end of Feb but as you say listen to th guidance and go from there.

Here is hoping it goes well on Friday

Fingers crossed for you.