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Questions to ask please

User
Posted 27 Oct 2018 at 19:40

Hi, my husband will be meeting with the Oncologist next week after recently being diagnosed. His PSA is 33, Gleason 3 4 and the cancer is locally advanced at T3, no bone mets. Just wondering what are the best questions to ask. I'm just so confused by stages, grading, margins etc.

Any help would be much appreciated.

Regards

Lou

User
Posted 28 Oct 2018 at 22:09

Hi Tony, thank you for your reply. Our main question is certainly going to be how the diagnosis has changed from being contained and how they are so certain of bladder involvement when MRI was clear. We  have already been told surgery is not an option by the Urologist so would imagine Oncologist will push for hormone therapy and radiotherapy.

Cheers 

Lou

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User
Posted 28 Oct 2018 at 01:07
Lou have you downloaded the toolkit from the website? It gives really easy to follow explanations of grade, stage, etc and the pros and cons of the different treatments.

Margins will only be relevant after he has surgery, if he has surgery.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 28 Oct 2018 at 03:09
Hi Lou,

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.

User
Posted 28 Oct 2018 at 07:46

Thank you both very much for your helpful advice.

Regards

Lou

User
Posted 28 Oct 2018 at 19:50

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

 

User
Posted 28 Oct 2018 at 21:11

Hi Lou, don't forget to ask the basic questions:

1. What options do you have,

2. What is thought to be the best for your case,

3. When will it start and how long will it take.

4. Where will it take place.

As Tony says the Oncologist might steer you towards Radiotherapy so you might ask why it's better than surgery in your case if they do.

On the other hand I wouldn't let the decision drift and take a lot of time thinking about it.   With Radiotherapy there is likely to be almost immediate start of hormones whereas with surgery you will be waiting for an operation appointment although that shouldn't be a reason not to take surgery.

I'm not sure how you got to see the oncologist as I was asked by a Urologist which treatment I wanted and then went to see only a surgeon.

User
Posted 28 Oct 2018 at 22:09

Hi Tony, thank you for your reply. Our main question is certainly going to be how the diagnosis has changed from being contained and how they are so certain of bladder involvement when MRI was clear. We  have already been told surgery is not an option by the Urologist so would imagine Oncologist will push for hormone therapy and radiotherapy.

Cheers 

Lou

User
Posted 28 Oct 2018 at 22:16

Hi Peter

It's all very confusing, last week after the biopsy result we were told the cancer was contained and was totally curable, but this week after MDT meeting we were told it was locally advanced with neck of bladder involvement. Told that surgery was not an option and the best course of treatment would be hormone therapy and radiotherapy. Oncologist appoinment this week so definitely going to ask about the change in diagnosis when all tests apart from template biopsy have been clear.

Thank you for your help.

Lou

User
Posted 29 Oct 2018 at 16:24

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/

User
Posted 29 Oct 2018 at 18:30

Thanks for your help Tony. So glad I found this site, it certainly helps to speak to people who have been in a similar position.

Regards

Lou

 
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