Hi All, I've been lurking around here for a couple of months gathering useful info before and since my husband was recently diagnosed with prostate cancer. As far as we know it's the least worst kind - Gleason 6 - but dealing with hospitals and getting info has us stressed to the max right now, so I'm letting off steam on his behalf.
So for reasons unrelated to prostate cancer he was having fairly regular PSA tests for a number of years. Early last year the GP said the results were concerning him and recommended a biopsy. Now, husband is quite squeamish about this area and didn't want any unneccessary invasive procedures considering his PSA level had been high-ish for some time. Sorry, I don't have the figures to hand for those tests. But later last year the GP contacted him again for a chat and almost insisted he have the biopsy because "I think it's cancer and it would be remiss of me not to tell you."
Now the dreaded C-word is mentioned he went ahead with the TRUS biopsy on 16th December. Obviously the waiting is stressful, but by 10th January when he hadn't heard anything I called around and nobody could tell me anything. Then a letter came for an appointment at Urology for 21st January. As the lengthy wait was becoming unbearably stressful I called to ask for the biopsy results but they don't give info over the phone. So at the appointment cancer was confirmed. I should explain here my husband is hard of hearing so I go to appointments with him and we get everything repeated to make sure it's correct. And we were told to begin having PSA blood tests every fortnight starting a week or two before having a template biopsy in around six weeks time, to continue fortnightly tests for a few months - all being stable to have them every few months. He explained what to expect with the template biopsy and my husband said to confirm "So the next step is wait for the biopsy appointment?" and the consultant confirmed yes, you'll get an appointment letter in the post. The nurse gave us a card with two names and two extension numbers on it, plus an info pack. Went home and immediately told the family about the biopsy around the first week of March while it was fresh in our minds.
Then he receives a normal appointment letter with Urology for the 17th March but no mention of a biopsy so I called one of the extension numbers to ask what this appointment was actually for, but they had no idea. She said she'd find out and ring back but never did. I rang again a few days later. Spoke to a different nurse I think, who again didn't know what the appointment was for and said "Maybe it's to discuss biopsy results" and I said "We haven't had a letter for the second biopsy yet" to which she replied "Oh that won't be for 12 months." I was shocked and explained what we'd been told at the 21st January appointment so she said she'd look into it and get back to me but never did.
So I rang them a third time to ask what was going on, she didn't know (see a pattern yet?), but then said "Oh, the appointment just changed on my screen as I was looking at it. It's changed to August." I'm saying "I just want to find out what this appointment is actually for if it's not for a follow-up to a second biopsy" and she replied "I'd like to find out just as much as you do!" Said she'd look into it and get back to me. Never did. Received a letter for an appointment on 25th August stating "The reason this appointment has been changed is due to the medical team being unable to attend clinic."
Now we're up to date. Yesterday he received a further letter with an appointment cancelling the August one and bringing it forward to 10th March instead. I rang again only to be told this appointment is because the consultant wants to explain everything "in person". And I have no idea what that means or what the appointment was even for in the first place. There's no explanation as to whether they expected my husband to continue having fortnightly blood tests until August then, or how we could have mixed up "biopsy in six weeks" to "biopsy in twelve months". Now I'm waiting for the GP to ring back this afternoon in the hope he can clarify some of it.
Sorry to whinge! But everything would have been so much easier to deal with if we hadn't got mixed messages and now another worrying three weeks wondering what they want to talk about.