I'm sorry to hear he is reluctant to do any research on his own and depends on you to do all of it for him. Some of that may be fear or denial, but a lot of it is probably because he trusts you as his wife and also as an RN. You said your follow-up was with a PA and you husband hasn't seen an MD since last summer. If it has already been determined that HT is his only viable treatment he should definitely be under the care of a Medical Oncologist (MO). You mentioned Cleveland Clinic. That is the kind of place he needs to be at and under the care of an MO who specializes in genito-urinary cancers - not just any doctor or PA. When to pause ADT (Androgen Deprivation Therapy) is a decision to be made in consultation with an MO and depends more on the individual patient's medical history and the MO's judgment as on any formula. This is why you want an MO who works full time with these types of cancers. Also there may be other treatments or clinical trials available that local less-experienced doctors may not know about
As for "I won't live a long life" this forum is full of guys who have gone for many years with cancer pathologies similar to your husbands who have been around here for years. Maybe a few of them will see your message and chime in soon.
I was "only" a high-risk Gleason 7, not a Gleason 9, but also with seminal vesical involvement (i.e., the horse was already out of the barn). I was 54 when diagnosed, had surgery that eventually failed, salvage radiation a few years later that eventually failed, moved my care to Dana-Farber where I just finished a year on ADT. Meanwhile I'm now 73 and am heading out tomorrow morning to organize and lead volunteer work crews on local conservation land. Life goes on.
-2002-PSA 9.4, 5 of 10 cores 30-50%
-RP 2002 PT3B N0 MX Gleason 3+4 75% left small focus rt
-PSA low 0.01 slow rise to 0.4
-SRT 2010 1 lymph node. Casodex 3 months
-PSA 0.00 thu 2014
-0.02 Oct 14; 0.2 Oct 16; 0.51 Jan 17; 2.46 Jan 18,
-6.62 May 18 enlarged lymph node start Firmagon;
-PSA 0.45 Jun; 0.02 Aug '18;
-0.02 May '19 Start ADT vacation
Post Edited (Bohemond) : 5/24/2019 2:15:10 PM (GMT-6)