Questions to ask please

It might be of some use to record his conversation with the oncologist, as some of the technical terms might not be understood there and then, and some people are understandably in shock when they attend these consultations.

When I had my initial meeting with the urologist to tell me the ‘bad’ news, they helpfully recorded the conversation and at the end gave me a CD of it. I have never listened to it as I already knew I had cancer.

Most phones have a recording function nowadays, and of course it’s only polite to ask the doc if he minds being recorded.

Best of luck, and I hope things turn out well.

Cheers, John.

There are no silly questions to ask Lou - ask anything you like. I even asked the oncologist how old his radiotherapy machines were (yes they were good new machines) and the urologist (surgeon) if I could choose which surgeon did my operation (surprisingly he said yes). In your case I expect your main questions should revolve around the suspected spread to the base of the bladder and how sure they are of this and what this means. Ask exactly why the change in diagnosis after your biopsy result. However, discussions will probably come down to a choice of treatments and with this in mind make sure you have a individual chat with both the urologist (who tends to be a surgery expert) and the oncologist (who will normally be the radiotherapy expert). I know they both have detailed knowledge of each others expertees but if you have a choice of treatments I found the consultant urologist strongly favored a surgery route but when I asked to meet with the oncologist he was equally positive and encouraging about radiotherapy and in the end it was his positivity along with some research and the help of the Toolkit that swayed me to choose hormone therapy followed by radiotherapy. I think without seeing the oncologist I would have just followed the urologists advice and had surgery. Everyones choices are down to the individual but whichever route you go down seeing both experts can really broaden your knowledge and help when it comes to treatment choice.

tony

Hi Lou - Sorry I forgot surgery wasnt an option for you.

Bladder neck involvement is usually spotted during a radical prostatectomy operation - however, in your case I would imagine that one of the experts has gone back and had a second look at the previously "clear" MRI scan and seen something around the bladder neck. The scans will all be there in your case details on the computer - ask to see them - they normally turn the computer screen so you can all see the screen and talk you through what you're seeing. If its inconclusive you might ask if theres any advantage in having a second scan concentrating more on the area of suspected spread. However, even if they only think there might be some spread youve got to target it to be sure really.

If there is some bladder neck spread dont loose heart though - its a complication yes but hopefully still totally curable. Radiotherapy techniques are advancing literally monthly - the ability to modify the shape and the strength of beams in three dimensions to successfully target cancerous cells and leave others unharmed is improving all the time. Bladder neck involvement comes under the same banner as seminal vesicle or lymph involvement and would be classed as locally advanced prostate cancer and although the success rates for contained prostate cancer treatment are up in the 90% range, the latest 5 year success rates for locally advanced prostate cancer involving lymph are still up above 70%.

The Toolkit has a great section describing T N and M staging and gleason scores.

https://prostatecanceruk.org/media/2491080/locally_advanced_prostate_cancer-ifm.pdf

This NHS article might be also be helpful

https://www.nhs.uk/news/cancer/high-precision-radiotherapy-for-prostate-cancer-shows-promise/