Diagnosed last night

You said in a previous post that the urologist thought it was in your seminal vesicles and pelvic lymph nodes? If that is the case, I would be a bit worried that they might be being a bit over-confident with the promise of cure. Or has the urologist changed his mind about the extent of the tumour?

I would be tempted to ask a few more questions like:-

- if I have surgery, how likely am I to need adjuvant radiotherapy?
- if I have radiotherapy, will you also be targeting the nearby lymph nodes?
- if i have radiotherapy, will I also have hormone treatment and if so, for how long?

I don't think you are being naive - the prospect of diagnosis is often worse than the reality and a) you now know what you are dealing with and b) it's not as bad as your worst fears

Hi, In my opinion you're quite right to be happy about this.  In effect they're offering you a cure.  The next bit of happiness is when you get a date to start treatment.  Then if it's an operation the next stage of happiness arrives when you wake up and feel alright.  From then on it's a matter of healing and getting a dose of happiness after good results of each blood test.  It's not all plain sailing and might not work out but happiness is allowed and is to be held onto as long as you can.

Best Wishes
Peter

They put all your stats into a nomogram which then predicts outcomes; you could ask whether your meds team uses it. The best known one is the Memorial Sloan Kettering version but it is American and they tend to have better outcomes than we do here in the UK. We were at St James in Leeds and they have adapted the MSK nomogram to reflect the results of recent years in Leeds and West Yorks. Results in the North East will be slightly worse than USA as well, I should think - it is all linked to socioeconomic groups, educational outcomes, local industry, statistics for men accessing health services, etc. Are you at the RVI?

When John was diagnosed, the urologist did it while we were sitting there and showed us that the outcomes for radiotherapy and surgery were likely to be the same but that John had a 55% likelihood of recurrence. That was also included in his diagnosis letter so we queried it (thinking it was a typo and meant to say 5%) but they confirmed it. John was in a tizz and didn’t really engage with anything he was told - didn’t believe he would have ED, didn’t believe it could come back, surgery was going to cure him and everything would get back to normal ... you get the picture? So he rushed into it and had the op. The nomogram was right; he had seminal vesicle invasion and bladder invasion, a biochemical recurrence and ended up with salvage RT/HT 2 years later. That was nearly 6 years ago though and he bumbles along at 0.1 and tends not to think about his prostate except at PSA testing time so it isn’t all doom and gloom at all.

You could ask the doctor the questions I suggested earlier plus whether they use a nomogram perhaps? And especially, clarify whether the comment he made about lymph node involvement was a red herring or was it confirmed in the scans?

That may complicate things a little bit but even more convinced now that you should ask for a referral to see the oncologist before you make a decision.

Another thing to ask on Saturday - 'will this be nerve sparing surgery?' Also, if you have the op privately, what arrangements do they have in place for after-care, referral to ED clinic, etc. John's op was private and we only realised later that this meant he had no access to a clinical nurse specialist, incontinence service etc and we had to really fight to get a referral to the local NHS ED clinic.

Another member here who lives in Yorkshire had his op privately in Leeds and never saw the surgeon again after he was wheeled into theatre. He never had a post op review or even the lab results and has had to rely totally on his GP since then because his local NHS urology service wouldn't pick him back up. So check, check, check :-(

I said I didn't want to know details and how big it was and just wanted to get on with it, but the surgeon wrote it on the letter he sent my GP, copy to me, 13mm. Which seemed quite large although I've read it's not too bad.

It was then that I decided the location of the tumour in the apex was well away from the bladder which might be gòod. That's my theory, not that I know. He said it didn't usually go to the sphincter so I thought if it's contained and not spread there's a reasonable chance of being clear for quite a while.

I looked him up on the NHS, private hospital sites and the BAUS site and he'd done a lot of ops which gave me confidence.