advanced prostate cancer

You are right. "Stage 4, advanced metastatic, .....no curative attempt.....palliative..." has a completely different impact from usual original diagnosis, when all is optimism. Medics interest seems actually to wane!

It's when the "most die with it not from it" mantra becomes plain upsetting! 

And it is a lingering, often painful and degrading death, which might also soak up all one's savings to detriment of children and grandkids.

Certainly hit me much harder. Not so bad at my age, never expected to live this long anyway, but for under 70s must be very difficult to accept.

I have no comforting words.

Good luck, Dave 

Hello Ever hopeful 

The group is for anyone with a Prostate Cancer diagnosis - it's for peer to peer support.

We are all on a Prostate Cancer journey and all at different stages. By having everyone together ensures that people just starting out can benefit from others who have "been there - got the tee shirt". We all arrive here looking for help and advice and I am sure if you ask questions relating to a T4 diagnosis someone with a Gleason 6 and on Active Surveillance is unlikely to offer you advice as the lack the experience.

Your experience of the staff at the Macmillan centre isn't helpful - we have over 80 different groups here - surely you don't expect to drop in unexpected - the staff having no previous knowledge of your diagnosis and to be able to help you in your particular situation at the drop of a hat. - I am sure they did their best in the circumstances.

You may wish to consider joining this group which may help in your circumstances:

Living with incurable cancer forum - patients only 

If you wish to enlighten me as to your specific issues I will try and help.

Best wishes - Brian.

Thank you, I will take a look at living with incurable cancer but I would just correct one point and that is that I did not just drop in for a consultation, I booked an appointment.

Hi Brian

Just taken a very quick look at the "living with incurable......" It could be helpful but what I really want is a similar forum limited to prostate cancer. At the moment I am taking relugolix. A year ago I was put onto apalutamide which induce a seizure. Despite being given the all clear by neurology I still can't drive due the the fact that DVLA have, or had at Xmas, a backlog of over 250,000 medical cases. My PSA is still 0.05 but I have no idea what comes next which is why I'd like to join a forum of those in a similar state.

Hello Ever hopeful 

I can only apologise on behalf of the staff if they haven't been able to help. It's a complicated journey and we are all different.

I am aware we have Community Members on the group on both Relugolix and Apalutamide - if you want to be proactive and search the Community if you put both medications and "prostate cancer" in the "Search" box above it gave me 488 mentions in threads on the site. I am sure given time members who are on these medications will reply to you.

A PSA of 0,05 is classed as "Undetectable" so that's a cracking result. As I am only a T3 I can't give medical advice as to what i think comes next, but maintaining that PSA result would be amazing.

As for the DVLA it's a known issue. I would be contacting my MP telling him you have the all clear and the loss of your driving Licence is causing hardship - ask him to get the DVLA to pull the proverbial finger out in your case.

If I can do anything else for you please do come back to me.

Best wishes - Brian.