At last we know results and have a gameplan!

After several weeks of frustration trying to find out results of an MDT meeting and breach the wall of the appointment system where my husband John seemed to have been forgotten, this week he had a text to say the oncologist was ringing him that evening. We have no idea if this was in the pipeline already or if it was a reaction to someone somewhere joining the dots after all our phone calls to various places, and realising an error had been made in the system. We think we know where and when but as finally things were moving forwards we were just thankful for that.

So we now know that the PC is indeed.....

Gleason 4+5 T4 N0 M1b 

but the oncologist is sending John for a chest and abdomen scan just to be sure it hasn't got to his liver or lungs (he suggested he would be surprised if it had but wanted to be certain).

The spread is in his spine and shoulder as well as his pelvis but we were expecting to hear that. We remembered that some months ago John had a pain in his shoulder at night and had to sleep on one side only but that has now rectified itself and we assumed the GP's suggestion that it was probably muscular was correct. Now we wonder...

We asked about triplet therapy as this was something that it seemed John might be eligible for from all our reading on this forum (acknowledging that it's from people's own experiences rather than any medical diagnosis). The doctor said this was something he always considered in cases of advanced PC but he wasn't convinced that it was always the best option although many people ask him about it. He said that the research did have a few flaws which led him to believe that it  might not always be any better than other ways forward. He said that if the chest and abdomen scan comes back showing anything sinister then yes he would definitely suggest chemo, but assuming it won't, his recommendation is to continue Prostap, add Enzalutamide very soon and then in a few months have radiation therapy. We did feel confident about his openness to consider whatever we asked about, give us considered answers, no hubris detected at all and, as you'd wish for, the sense that John is in the driving seat really with help and advice to facilitate whatever he needs from the experts.

John has an appointment tomorrow to meet the oncologist and sign a consent form, then off we go. Tomorrow he can ask any further questions so if anyone can think of something then do pop a reply on here. All we can think of is to ask about burning any bridges choosing one course of action above another, either right now or in the future.

But hopefulness now restored