thanks so much for the words and advice, all. i think part of what went wrong is just there were long wait times and no sense of urgency from all the medical professionals we dealt with. as soon as the met showed up at the ER, the uro waited for a week and a half before seeing my dad. and even at that stage didn't rush him to radiation.
we saw a radiation onc 2 days before the operation and she was again, very lax and instead of starting treatment, sent my dad away with nothing except a warning about
spinal compression symptoms and to call ER if they show up.
in contrast, when we went to a new rad onc at a different hospital this week (PMH in toronto) -they were thorough and would've started radiation right away if my dad hadn't had surgery - but they want him to heal first. they are the ones we requested at the time but we were pushed into going to the place that did his radiation the first time around in 2010.
so it's just timing as well as poor facilities and less-good medical people and unfortunately we just got caught up in it. i wish we had had an earlier uro appointment and had pushed more for PMH initially and also for starting radiation sooner but it may not have happened as the people we dealt with were just the lax type.
now we just have to deal with this different picture. it's devastating that options are more limited now and that the cancer may have spread a lot wider due to cutting into the tumour/disturbing the cells. i was reading people's stories and feeling encouraged but now i wonder if those even apply to my dad anymore with this surgery and met operation proliferating the cells. i guess those stories were my strands of hope and it's hard to let go of them.
we were so happy that 80% of the met had been removed. if we'd only known what the repercussions of that was
but now we just need to get on and fight this with everything we can, and hopefully my dad can still manage this for many years like so many people on here have, some with even higher gleasons and more mets.
thanks again...i am very grateful to all of you!
Jan 2010:Gleason 8 post-surgery / PSA 4 /PNI
PSA after RP:2
June 2013:Lupron stopped/PSA 0
Jan 2016 Chemical recurrence 0.04
Oct 2016 PSA just over 1
Feb 2017:PSA 0.45. mixed bone lesion T6 spine, surgery for spinal compression. Casodex/Lupron
Doc suspects anaplastic PC as PSA low.Path report coming