Husband diagnosed last October, Gleason 10, Cribriform and low volume metastasis to neck, spine, clavicle, two opposing ribs and some pelvic hot spots we were told at the time.
Due to other health conditions only treatment option was Prostap injections started November 2025, now 12 weekly and Daralutomide, started end December 2025.
PSA dropped to 0.145 end January 2026 with two further drops by May, down to 0.072. Great, although hot flushes and fatigue were a price to pay. Oncologist put him onto a medication for the hot flushes and they have helped.
Then July PSA PSA risen to 0.127. Oncologist said not to worry, they can fluctuate, come back in 3 months.
PSA a couple of days again risen further to 0.207. Still low but given he is Gleason 10 with Cribriform I am hoping this next visit to Oncologist will see some sort of investigation.
I realise each hospital trust follow their own procedures but does anyone have an idea as to what might be the next steps. I thought maybe another PSA in four weeks? If continues to rise a scan?
I must add that generally he is deteriorating. His fatigue is now extremely bad. He told me only yesterday that he has a burning sensation in his hips if he stands for long and he has recently complained about pain in his neck. He always puts these down to other things like the way he has slept etc but I’m worried as I see things like extreme fatigue with very little effort causing it, balance issues, worsening brain fog. Our adult children have also noticed this deterioration and commented to me recently too.
The problem is getting him to tell the oncologist this, particularly as at the last appointment the oncologist said he only wanted to hear from my husband how he was and all he said was he was concerned about weight gain! I know he’s frightened and I think he’s in denial and doesn’t open up for fear of more interventions as he has said he’s fed up of appointments, blood tests, more medications (presently on 29 tablets daily).
I know it’s not long until we see the oncologist but I’m so stressed they will just leave it another 3 months. Last appointment was 3 months ago and knowing how he is I’ve been worrying so much since and wasn’t surprised to see another rise in PSA again this time.
Thank you.
