Help what does it all mean.

Hello Jules

Thank you for your post - I will try and answer your questions as honestly as I can.

* With an initial PSA reading of 344 - It's to be expected the Prostate Cancer has left the prostate and gone "walkabout" in his body. It's probably in his lymph nodes and possibly spread to his bones. The genera rule is with a PSA of over 100 you can expect a spread but not always.

* T4 - This is confirmation from the diagnosis it's spread, You are looking at Chemo as treatment but I can't say for sure until you have the full diagnosis.

* 9.5 out of a score between 6 and 10. This sounds like his Gleason Score from the biopsy - they range from 6-10 - 10 being the most aggressive and the cancer cells likely to grow more quickly.

I agree the results should come from a Doctor and my personal view, they should be given in person.

The "board" you refer to will be the MDT - Muti-Disciplinary Team. They meet -usually once a week to decide on his care plan.

My plan of action would be:

1) Contact your hospital PALS team (Patient Advisory and Liaison Service) advise them you are not happy with the way the diagnosis was delivered. You would like the full diagnosis (it should be something like mine (Gleason 9(5+4) T3a N0 M0). This will tell you how the cancer is/has spread. Also tell them if it is a fast growing cancer as you have been told - if it is a high Gleason. - it's causing you both anxiety and you need to start on the treatment pathway ASAP.

2) Tell the hospital you are free to accept short notice cancellation appointments should one become available.

3) Yes by all means contact your local Maggies. They are a fantastic Cancer support centre for you and your family.

4) Any additional support you need - anything -even a chat or winge - contact our support line - they are fantastic people on 0808 808 00 00 {8.00am - 8.00pm 7 days).

Well - that's a start - I am about all day - anything else just post and someone will reply.

Best wishes - Brian.

Thanks Brian

I have manged to find the number for the secretary and asked them to get one of the team to give me a call Dave was at work when he took the call and not really a suitable place to ask questions or be prepared to ask them as was a bit of a shock.

Hi Julesnew59

Not certain of where you live, things are different with all the doctors strikes, not helping you or anyone else in this situation. Usually and I’m speaking for a few on here, they give chemo, followed by radiotherapy, hormone tablet's or injections should be starting if not on your last visit, then on your next.

My PSA when I started this journey was 893, Gleason 9/10 stage 4, so unless it’s different where you live that’s usually how they attack people who are incurable, by the way I’m well over seven years with this disease so we can live a fair amount of time. Hope you get some answers soon and he starts treatment soon after.

Stay safe

Joe

Great post Brian

Joe

Your have really giving me hope the way the nurse spoke to him that was it its too high so no chance this is why I need to speak with some one as I would have questioned and probed where he was caught off guard and don't think took everything in. I am awaiting a letter she mentioned he should get and for the outcome of their panel meeting and hoping we get to see the oncologist and I can then ask what the treatment path we is. I am hoping they are going to provide one. I have worked out we are on day 37 from referral so will be keeping a close eye on that as the target is supposed to be 62 from referral to treatment on fast track. He has just had his 2nd hormone injection yesterday.

Julie 

Hi Julie

It's good to know the hormone injections are being done. Just to confirm the Prostate Cancer lives on testosterone which is it's "food". By introducing the hormone injections this will quickly reduce the levels of Dave's testosterone and although the cancer has gone walkabout - it will stop it growing.

Another iron in the fire is to download the NHS App (This only works in England) and then ask your GP practice for FULL (and make sure they understand FULL) access to his medical records. Once this is activated you will be able to see test results and letters as soon as the GP get them (or upload them!).

Best wishes - Brian.

Hi Julie

As Brian has mentioned, you can get your records might cost, but they cannot deny you having these. Hormone injections are great, I had mine to reduce PSA before they proceeded with further treatment,. My first chemotherapy was in September after being diagnosed in July, gives you an idea of how he just has to wait a little.

Hope you get to see someone soon, but the first line of attack has started, keep us informed how things carry on.

Stay safe

Joe

Hi Joe

Got access to full medical records through System online what our GP uses so we can now see all the meds notes letter and appts. He has had the double hormone 3rd sept and the single monthly one yesterday so now I am hoping for this letter and appt so maybe with some luck get some chemo quickly will keep you posted tks for the support