Newbie

Hello Steve (stenbabs) 

A warm welcome to the Macmillan Online Prostate community, although I am sorry to find you here. I am Brian one of the Community Champions here and on my 4th year on my personal Prostate Cancer journey.

Can you please clarify your diagnosis if you can for me Gleason 5? - They only start at 6  and go up, and Grade Group 5 would indicate a Gleason of 9 or 10!

My biopsy results are PSA 182 Gleason 9 (5+4) T3aN0M0 so if you can give us your diagnosis with a correct Gleason Score with your TNM staging we will be in a better place to help you.

I hope the above helps - I look forward to hearing from you.

Best wishes - Brian.

Hi Brian, i got the Gleason score from the booklet that the cancer nurse gave me, she had put a GG5 were it says Gleason score and a GG5 were it says grade group.

I think she must have marked it wrong , i am clueless really. 

very hard to take it all in.

thank you for reply. steve

Hello Steve (stenbabs) 

We all start off like a rabbit caught in the car headlights - there's so much to take in. 

I think it might be a good idea to contact your urology department and ask them for your correct Gleason score and TNM staging. Have you had a meeting with your team and are you on any form of treatment?

Best wishes - Brian.

Hi stenbabs the diagnosis seems odd.  Did you get a TNM staging (mine  is T3cN1M1).  If you can’t find it don’t panic.  Are you able to use the NHS App to access your medical records.  If not, it’s worth contacting your surgery and ask for FULL access.  Are you on any medications yet.  We can’t give you much help unless we know more about your diagnosis, but whatever it is, it is either curable or treatable.  David

Sorry Brian, i thought i had mentioned in my first post that i have my 

scan results tmr. the Booklet the nurse gave me had some info in it 

she had written GG5 FRO GLEASON SCORE  AND GG5 FOR CANCER GRADE.

i think she may have made a mistake. steve

Sorry David, i thought i was still talking to millibob. i will get the hang of it eventually.

Hello Steve (stenbabs) 

No problem - see my post above about an hour ago.

Best wishes - Brian.

Thanks Brian, i will have all the info Tmr after my consultation,

Thanks. steve

Hi Stenbabs.I also read soewhere that Green Tea is good for lowering your P.S.A Also Tomatoes contain some ingredient which is good.I was first diganosed in 2019 with a P.S.A of 1220.was put on Bicalutamide 150 mg for two months.Then P.S.A went down to under 1. From then also on Zoladex which I am still taking every twelve weeks. But now my P.S.A has crept up to 38.75.So back on Bicalutamide 50mg whic may be forever.I'am 83 in October.

 Best wishes and good luck for the future. Derek.

Hello Steve (stenbabs) 

If we have your Gleason Score and TNM Staging BEFORE your consultation we can advise you of the alternative treatments available. I think it's in your interests to get them before the meeting.

Knowledge is Power.

Best wishes - Brian.