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.

Hi Ever hopeful  welcome to the forum. You may find it easier to scroll through a few posts and read people’s profiles, just tap on the name/ avatar and that will take you through to their journeys. You can then either “friend” them and have a one to one chat or just post on the feed that’s relevant. AsMillibob says there’s lots coming up in the search that should match your stage and needs.

Hope that helps 

L 
 

HiCarl28 

I’m open mouthed with the negativity. 
Maybe you shouldn’t look forward to your “painful and degrading death” that will soak up your savings to the detriment of your children and grandchildren. You could always  spend your savings on taking them all on a fantastic holiday and make some great memories for them. 

Myself and BW are well under our 70’s and even though his prognosis is ‘no cure” we have accepted it. We are all going to die at some point, what matters is what you do with your life now and how you fill it.  Instead of being cup half empty - think cup half full and try to make the most of it. 
x

Sorry to amaze you. I do not view realism as negativity, simply logical reasoning. 

No chance of gathering my small family for a combined holiday for practical and other reasons. Memories don't outweigh a roof over ones head - and if my assets lost one of my kids heading for homelessness.

Of course we're all going to die and my life style took me near many times. I gave up big m'cycles when having children DID make me afraid of dying. Restarted once they were adults and I'd quit the drink  -  I'm a 23 year sober alcoholic. 

And yes for now my life with my partner of 7 years (both widowed before we met) goes on as it has since first diagnosis and treatment. 

But I have to plan for the inevitable...facts and logical thinking. 

I hope you continue to fill your lives with lightness and normality.

Good luck, Dave 

Hi Ever hopeful  sorry you are in this position.  I wrote a post which might be useful. The end - straight to palliative care!  I am happy if you want to private message me.

You said something positive there!!!  Thanks yes we will try to fill our lives with as much happiness and fun as we can. 
Lorraine 

*Also well done with the 23 years sober, not an easy one, we lost two members of our family to Alcohol, so I salute you for being able to stop.