Prostate

I joined here recently. First diagnosis 23/12/25, biopsy 08/01/26, full diagnosis following CT and bone scan 22/01/26 stage 4. Spread to lumbar region, pelvis. ribs 6 and 7 on right side and the right side front of skull. 2 x HT Decapeptyl and Enzalutamide taking PSA down from 33.9 to 0.2. So much as the little sod has colonised me the HT has practically stopped it growing. Waiting to see what next. Side effects of my HT for me are hot flushes, mood swings, very irritating restless leg syndrome and fatigue.

As I'm new to all of this there's not much advice I can give you but I have come across some more experienced very helpful people on here so hang on in.

Hi Carrera and welcome.  Good to see you, we were all new here once! You can read others profiles by clicking on their name or avatar.  You can add your own profile (in my case I use it as a crib sheet for myself).  If you make a ‘typo’, you can change it using the ‘More’ button.  See you around.

Hi All. Having my CT Planner Scan tomorrow morning at QE. Got to get there for 8am, but it’s only down the road for me. Also having an MRI scan at 10am. Haven’t got any paperwork or anything in writing for MRI scan. They said when I rang them the other day that I’d be there a few hours, but if I’ve got times i don’t see how that can be? Was given some dates for early August to start SARB  radiotherapy & no hormone therapy. Assume that’s still case. Say to drink 4/5 pints of water a day. Rang me up on Saturday morning to ask if I was still coming for MRI scan. I said obviously!! Bit annoyed that I have nothing in writing for MRI scan, letter or text.  

Hi, I am also under QE Dr Fackrell. He's a Spurs fan but don't hold that against them. I get QE calls and no letters sometimes. I think it's how they have to manage the machines. Overall my care been very good. Back Tuesday 

Helllo Brummie69 

The issue is with some appointments that by the time they have printed and posted out the appointment letters  - you will have missed the appointment.

Nearly every NHS Trust is different - I am lucky in that all my appointments come up on the NHS App- but not eveyrone has full access to their records or indeed the App.

As for Radiotherapy - you need to listen to the instructions from your team - many of the NHS trusts work on full bladder for radiotherapy - some (including mine) use empty bladder!

Brummie69 said:

Bit annoyed that I have nothing in writing for MRI scan, letter or text.  

It's nothing to be annoyed about - the NHS are on your case - be thankful.

Best wishes - Brian.

My Trust is on the MY Care System so I can pick up on test results, appointments and GP letters electronically a lot quicker than waiting for snail mail which as you point out often arrives after the due date.

Hi Carrera. Think I am under Dr Roji. My complaint just a little niggle really & I’m sure care will be as good as rest of QE. I go to the renal too after a kidney transplant last August where the care is good. Kidney doing well unlike rest me, but small steps i guess. I think MRI scan got missed off letter about CT scan. 

I got follow up prostate diagnosis letters on Friday. They were typed out in July, but dictated in March & April. 

Yes nhs are. Just a niggle really. 

I understand the niggle. It's strange since I was diagnosed people are telling me I'm less patient and a bit more moody. I did ask my 3 ex wives if I was difficult to live with ‍♂️