Thank you for this, Donna. My husband's situation was a bit similar to your husband's, upgraded to 4+5, postive bladder neck margin, +SVI, +EPE, and 1 positive node. I have gone through periodic episodes of anxiety just as Leah has. He's on ADT now and finished radiation back in May. PSAs holding at OSU's nondetectable standard of <0.04- we are very thankful. The ADT is a bit of a rough road for him, but his attitude is that it's just another treatment that he has to endure. It was comforting to read what you've written. I need to keep this post handy to read again, whenever my mind wanders into the darkness a bit.
Another wife here. I do understand your fear and anxiety. I'm so sorry. But just for perspective, my husband was diagnosed 5 years ago. His initial diagnosis was Gleason 7 (4+3). We were told it was organ confined and that surgery should do the trick. Like you, I was relieved that all would be OK. Post surgery pathology was a nightmare. Gleason was upgraded to 9, lots of positive margins, SVI, lymph node involvement, persistent PSA that never went below 10...you get the picture. At that point, I was certain that PCa was going to take my husband away from me sooner rather than later. The terror of unexpected pathology results is real. We followed up with ADT and salvage radiation and his PSA shot up again as soon as he went off ADT. For about a year and a half, I lived in constant anxiety. It's now five years down the road. He still doesn't have one single detectible met. He looks good, he feels good. He goes to work every single day. He plays with our grandchildren, goes fishing, and tinkers with old boats and cars in the back yard. (Makes an awful mess, but no complaints from me.) He still does (almost) everything he ever could. So, now I've realized that PCa may kill him, but it's not going to be anytime soon. We have a date to dance at our granddaughter's wedding. Considering the fact that she turned 10 in June, he has to hang around for a while to make that happen.
I've said all that to make this point. Right now, you probably feel like PCa has surrounded you and it's all you can see. You need to reach a point where you focus on what you have instead of what you might lose. It's not easy. Especially when you've built your life with and around the person you're afraid of losing. It takes time and perspective. You can't make that leap just because other people tell you to, so give yourself some grace. Most likely, a few years down the road, you'll be telling some other terrified wife that it will all be OK. Go ahead and make those long-term plans. The odds are very good that your husband will live a long life. If you need to chat, you can e-mail me.