My OH was diagnosed earlier this year with low grade PCa and put on active surveillance. The consultant said that he would continue to have PSA tests and if all ok there would be no need for any further intervention. If the levels rose then they would suggest the biopsy that takes 32 pieces, which OH wasn't sure about as he had a bad infection after his first biopsy which took several weeks to go.
Consultant said he would be discussing OH's case in the weekly management team meeting with the top consultants at Kings Hospital and would let us know what they thought but he felt at the time active surveillance was a good idea and we were introduced to the oncology nurse who would be our contact. After about a month OH got sent an appointment for an MRI scan, which we duly went up for. Two weeks ago we were sent an appointment to get the results. Turned up at the hospital and Consultant was bemused as to why we were there because he couldn't give us the results until he'd gone back to the management team to discuss it with them!
To say we were disappointed is an understatement! We were quite cross, we'd already been worrying about what the results were and now we have to wait until the management team have discussed it before we find out! Its so annoying, more worry to add to the other problems of tinnitus, and irritable bowel and possible diverticulitis!
We know that we are getting good treatment and support overall and that obviously the consultant needs to discuss any further treatment with his team, but it would've been good to at least have our minds put at rest on the day, or at least told that there was something but they just wanted to double check everything.
Its very hard to stay positive when you don't get the information when you get sent an appointment - apparently it was a mistake!
Still, we are trying to remain positive, he doesn't want invasive treatment unless it has progressed and we are sure it hasn't. Mind you our friend's PSA level was a lot higher than OH's and his biopsy showed no cancer but he's not been offered anything else to deal with the high levels and is just waiting for a follow up appointment!
The waiting for the results is the worse thing, but no news is good news :)