The waiting is terrible

To build on what Jeff wrote, here's the sequence that things happened for me:

T: Emergency debulking surgery on the spinal lesion, and biopsy identifying it as stage 4 prostate cancer

T+2 weeks: started on ADT (Firmagon) and ARSI (Erleada).

T+4 weeks: post-op radiation to the surgery site on my spine (20 gy of SBRT over 5 sessions)

T+3 months: PSA reduced from 67 to undetectable (< 0.01)

T+3½ months: home from hospital (in a wheelchair at the time)

T+6 months: full "curative" dose of radiation to my prostate (60 gy of SBRT over 20 sessions); went into last session using a walker rather than a wheelchair, and rang the bell

T+12 months (give or take): oncologist tells me I'm in full remission

T+2½ years: switch from Firmagon injections to Orgovyx pills (big improvement in quality of life)

T+3½ years: PSA is still undetectable; I have about 75% of my old mobility back, and am living a mostly normal life

Everyone's path will be different, but we didn't know how all of this would go when we started out. I made my wishes clear ("I want to fight") and the oncology team listened ("we'll throw the kitchen sink at it"). My care is classified as "palliative" since my cancer is incurable, but Ive been getting so-called "curative" levels of treatment anyway. I kept advocating for my self, taking treatment sooner rather than later whenever I was offered a choice. Some of it was rough, but zero regrets.

Thanks for this. I'm in tears reading all this...
My husband's fear is being a burden, I tell him he will never be that, we're married, I've seen him naked plenty of times and will help with whatever.
My gosh this is a good timeline of events.

Thanks for the reply...
We do have great support from our church and friends and our 4 kids.
It just seems so dire, because the bones and lungs and everything else, statistics look very bad. Of course we'll see what the doctor says. But my husband is getting "his affairs" in order. He's just hoping our kids will remember him, our youngest is 9 (9, 12, 20, 22)

Wanted to add one more comment, be careful of Doctor Google. I found out the hard way a lot of the info is years old. The hard way being it shook me up some. I found this site and there are so many sharing the same boat. This site has been a blessing for me, so much compassion and support to us all. Ask any question and someone will relay their story to help as best they can. I wish the best to your family on this journey. Best to all.

Just to build on what Steve wrote, even a recent study might be based on much-older data, and a lit review, even more so. So if you see a publication date like 2020, don't assume that they're actually talking about what the situation was like just 5 years ago; they might be reporting on a trial that started in 2008, or (if a lit review) analysing secondary data in other papers that are themselves 10+ years old, based on data collected 20+ years ago.

So much has changed in prostate-cancer treatment recently that any research paper based on observations collected before (say) 2018–20 has little to do with our survival prospects now, even if it was just published and is helpful for researchers and practitioners in other ways.

So sorry to hear about your husband’s stage 4 prostate cancer. (I was diagnosed with low-grade, localized prostate cancer at 56y; had been getting PSA tests since I was 45y.)
Regarding his difficulty urinating - have they prescribed him either Tamsulosin (Flomax) or Finasteride?
With the PSMA PET scan results, what were the SUVmax scores assigned to each of those suspicious areas? Knowing that, you won’t have to wait 10 days to ask the oncologist what’s going on.
These days there are always treatments available for most any stage of prostate cancer. Use this time to get up-to-speed on his diagnosis, any other tests that might be useful, as well as treatment options.
Prostate cancer diagnoses and treatment is one of self-advocacy and shared decision-making. The more informed you are, the more specific questions you’ll ask, the better treatment options he’ll have as a result, and (hopefully) the outcome will be better.
It’s easy to get overwhelmed; don’t let it happen. Stay focused on the ultimate goal.
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His situation can be a lesson-learned for others, his siblings, as well as for any children (males or females) you and he have:
> being in good shape, working out, and eating well can be helpful at minimizing the occurrence of prostate cancer, but not significantly.
> early PSA screening and early detection is critical. (When did he start getting annual PSA tests?)
> prostate cancer usually has few if any symptoms when detected early, and depending where the lesions are, may not be significant at all. (It’s never a good thing to let new symptoms drive testing. By then, things may have gone too far.)

Good luck.

I suggest to read Dr Walsh's book. I ordered a copy, it arrived this past Friday.

What were your side effects of it?
My husband is afraid of the hot flashes and mood swings and all the other stuff that can happen.... I told him- HA welcome to a woman's world in mid 40s.....
And that I'd rather have a husband and no sex life, than a dead husband (and still no sex life)
I'm surprised that UNC didn't jump all over us and started something right away for him, instead we have to wait 10 days from the PET scan.
We just want answers if there's hope or not, so far google and forums like this are pretty dire and I haven't come across anything that's as bad as his.
Yet the symptoms are minimal!