Thanks for starting the group Darryl, it’s often difficult to find a lot in common with men in other support groups, being both stage 4, and relatively young.
A quick review, I was diagnosed December 2012, PSA 20, gleason 9, 12/12 cores postive, most between 50 and 100% cancer. Started ADT immediately (zoladex and casodex). Urologist sent me to a radiation oncologist, as he said surgery would be pointless. In 2013 I did radiation to prostate and two tum ours on my spine. PSA stayed 0.01 for a year so stopped ADT.
PSA started rising quickly again, so after a PSMA PET scan in 2015, radiated a new tumour on spine, unfortunately that didn’t seem to help, so followed up with ADT in 2016 and docetaxel in 2017. PSA plummeted to 0.01 and stayed there for a year, so stopped again.
Since then I’ve been off all drug treatment for the last 3 years. PSA slowly but steadily rising from 0.01 to 0.36, doubling about every 12 months. It’s a bit of a waiting game between each test and deciding when to start treatment again.
When diagnosed stage 4, I thought I had a year to live! So I probably panicked a bit My kids were 15 and 20, I thought I’ll never see them married or see any grandchildren. We did a trip to Europe, as a “last chance” before i started radiation. I kept working, as I enjoyed it, though I had to cut down to 4 days a week due to fatigue. Chemo really did me in though and I stopped work. I’m on disability insurance, but that cuts out at 65 (I’m 58 now). I may not live that long but it’s a constant worry. It’s a weird feeling being worried about living past 65!
I’ve learnt that I just have to take life one day at a time. I still make future travel plans, if it doesn’t happen, it doesn’t happen. My strategy is to stay alive for the next treatment to come along, which has served me well so far .
