I've been lurking here for a couple of years but it's time for me to introduce myself and offer up our experiences so far. Please excuse the length of my story!
My husband was diagnosed in the summer of 2016 at age 60 with advanced metastatic disease. It took over five months to find out what was going on--he had a persistent pain in his flank, so lots of chasing around after kidney issues, diverticulitis, etc. etc. Finally his primary doc did blood work and found PSA over 400 and ALP at 932. (This is the same doc who said he didn't "believe" in PSA testing... but we have a choice of one doc where we live, so here we are...)
Hubby's first bone scan was bad--he lit up like a Christmas tree. He was biopsied soon after, Gleason 4+3=7. The biopsy didn't go well--a bit more on that later.
We live on a rural island about 100 miles from Seattle, so we sought treatment at a nearby hospital rather than try to deal with all-day travel to one of the big hospitals in Seattle. Our insurance choices are extremely limited in our county so we have not had the option of treatment at SCCA (Seattle Cancer Care Alliance).
Our first oncologist was a wonderful fellow & he got hubby on Lupron, Casodex, & Docetaxel immediately. PSA came down right away but the treatment has never helped with the pain, so opiod pain meds have become a fact of life.
In 2017 we were advised to try EBRT to try to relieve the pain. Ten treatments @ 3Gy each for two weeks. Never touched the pain at all, but the radiation really knocked him back hard: much fatigue and weakness, which never really abated.
There was never a discussion about treating the primary tumor, but his PSA nadir was 0.8 and usually stayed under 2 which the MO said was castration-level for someone who still had a prostate.
He had two ADT vacations--the first helped a bit with his energy, the second one not at all. Beginning this year his PSA started to rise on Lupron + Casodex and by the end of March it was over 20. Our old MO had passed away in 2018 and the new one started my husband on Abiraterone. PSA kept climbing, and then our "new" MO retired in May and with COVID craziness we spent over two months trying to get an appointment with another one. By the end of July PSA was over 90 and so the "new-new" MO started hubby on Xtandi. PSA is still climbing and the doc said he probably was AR-v7 positive and now hormone-resistant.
PSA is now almost 200 and next week hubby starts another round of docetaxel.
CT scans have showed no visceral mets and generally little progression of the bone mets. Pain is slowly increasing but still manageable with opiods. Five months of Abiraterone and Xtandi have left him almost completely drained of energy. On the old ADT he kept very active, working outside every day, hiking, etc. but now he can't do much of anything. Doc thinks it's the cancer but hubby always felt the second line ADT was just not at all good for him. (News flash: hubby has been off Xtandi for just over 24 hours and already he feels better than he has in months!)
So here's the thing--after reading many, many posts of others' experiences I realize that there is a pretty big spread in how people are treated for this disease. Since we've been going to regional hospitals rather than a big Cancer Center, there hasn't been much (or any, really) proactive treatment. I pretty much have had to do all my own research and push for anything other than the bare minimum of treatment. Maybe the assumption is that if you aren't being treated at SCCA you aren't interested in living for long? Or maybe our insurance isn't good enough? In any case, it feels kinda rotten.
We had three terrible experiences at one local hospital and refuse to go there again for anything, not even a hangnail. The biopsy was performed w/o anesthesia of any kind--the doc said it would be "just a little pinch." When I saw my husband's face as he came out of the procedure I wanted to break up the place... this same office sent the bills to the wrong address and they almost went to collection before we found out... then we were referred to the same hospital for radiation, which clearly was set up simply to bill the maximum amount possible to insurance...but that's a story in itself!
He was never offered genetic testing until three years into the game, a year after I had on my own initiative secured a free Color test from a university study. He's never been offered a somatic biopsy. After failing both Abi and Enza, I asked the MO about getting an AR-v7 test and he said hubby could only get that in a clinical trial. Three times we were referred to a particular specialist only to have a last-minute switch to a junior doc on the team--maybe this last things is what everyone gets, I don't know, but it does feel like a bait-and-switch when it happens.
My husband likes the current MO. The cancer center is big and impersonal but the care seems adequate. But almost all the other patients are elderly and frail, people that don't seem to have a lot of options and/or money. It's a sad deal but that's where we are.
So onwards we go, hoping that the docetaxel will knock back the cancer some and hubby can get to feeling a bit better and find life worth continuing for a while yet. I know there are still a few options after docetaxel, but given what we've gone thru the past four years I feel like we're going to have to fight like hell to get anything past this point other than the offer of palliative care. My husband is a fighter but right now he's worn out, and so am I.
This post has ended up way too long, so I will reserve specific questions for another time. Thank you all for taking your time to offer your experiences and perspective on this forum. Blessings to you and your loved ones!
Next steps?
Stopping docetaxel at just 4 per Dr - good move or not?
Failed Docetaxel, then Xtandi, what next?
Now I'm really confused 
Standard genetic testing panel for PCa?
