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Consultant Discussion Questions

User
Posted 10 Apr 2019 at 08:49

So the day has arrived, off to meet the urologist who my MDT are recommending treatment with this afternoon. I have a bunch of questions outlined in my head and some written down too. Just wondering if there was anything I really really ought to be asking?

Also there are a couple of things which have popped up recently via friends. The first is Cyberknife treatment which seems like a possible consideration but seems relatively new so not sure how much post treatment data there is. The second is a company called Oncologica advertising advanced diagnoses via DNA testing, it all sounds a bit too good to be true, wondered if there are any with experience of this out there.

Big day anyway. Trying to focus on work for now ahead of the appointment :)

 

User
Posted 10 Apr 2019 at 11:19
Only a tiny percentage of prostate cancers are genetic so the DNA testing might be a waste of money but no harm asking your urologist about it. Main questions for this afternoon would probably be ‘are you proposing to do full nerve sparing?’ ‘what is the predicted likelihood of me needing adjuvant radiotherapy?’ and ‘when is the op likely to take place?’
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 10 Apr 2019 at 11:30
Hi Lyn

Thanks for that I've definitely got questions about nerve sparing down already (my consultant uses DaVinci) and when it's going to happen down. My take from other conversations here is that the team will identify treatment which is best suited based on a number of factors but it's worth challenging that anyway.

User
Posted 10 Apr 2019 at 12:11
It might be worthwhile recording your consultation on your phone, (with the permission of those present). Many men are in shock and a lot of the conversation goes over their head.

They helpfully gave me a CD recording of my diagnosis consultation, which I have never listened to as I already twigged I had PCa, so the consultation came as no shock at all.

I wouldn’t waste my time and money on any DNA quackery if I were you. I am part of a trial at the Royal Marsden to establish if there is a genetic link, but as no other male members of my family had PCa and are all dead, I fear my input won’t be of much use to the rearchers.

Best of luck.

Cheers, John

User
Posted 10 Apr 2019 at 13:03

Originally Posted by: Online Community Member
Hi Lyn

Thanks for that I've definitely got questions about nerve sparing down already (my consultant uses DaVinci) and when it's going to happen down. My take from other conversations here is that the team will identify treatment which is best suited based on a number of factors but it's worth challenging that anyway.

 

This is very true but some men are recommended to have surgery with adjuvant RT (with or sometimes without HT) and it always interests me to know why the MDT would recommend that rather than just going straight for RT/HT and saving the patient from two sets of side effects. You could also ask the surgeon:

- how many robotic RPs he has done

- what % of his/her patients are continent a year post-op (and whether that is properly continent or the NHS definition of one pad per day or less) 

- what % of his patients can get an erection sufficient for penetration 12 months post op, and is this with the aid of tablets, pumps, etc or natural erections

- what % of his patients have positive margins on pathology 

- what % go on to need adjuvant or salvage RT 

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

User
Posted 10 Apr 2019 at 13:11

Originally Posted by: Online Community Member
I am part of a trial at the Royal Marsden to establish if there is a genetic link, but as no other male members of my family had PCa and are all dead, I fear my input won’t be of much use to the rearchers.

 

Bollinge - out of interest, have the men in your family tended to live to a ripe old age? Despite my dad getting PCa at 62, he is still well 20 years later, still has all his older brothers (none of whom have been diagnosed but may simply have not been tested), his dad was in his 90s and died of undiagnosed lung cancer (a miner all his life) and his uncles lived to be ancient as well. John's dad was 83, his dad was 89, the uncles were in their 90s ... they say people are living longer but in our family the men seem to be going the opposite way! 

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

User
Posted 10 Apr 2019 at 14:41

Noted those questions thanks a million. 

Bollinge for info I already know my diagnosis this is a chat about treatment. I have company at my consultation my (bit of a miracle) new partner who also accompanied me to my original prognosis discussion.

She will keep notes for me although she's very much "get you healed and worry about the future later", which is easy to say but I'm aware the future may be set by the healing.

User
Posted 10 Apr 2019 at 15:30
As regards the aspect of longevity, I think diet and fitness may play a part in contributing to cancer and certain other issues. My ancestors all lived to a good age and my father to nearly hundred. For him, like many of his contemporaries, he walked to his job and other places because the cost of running and maintaining a car was beyond his means for most of his working life. He did play a lot of sport though and after he finished playing cricket he went on to play golf until he was 90. He also tended an allotment which had the advantage of providing fresh vegetables at no cost whilst providing further exercise. By comparison, many younger people nowadays become accustomed to traveling by car even to school and throughout their lives rather than walking or cycling. and taking adequate exercise. We have also become accustomed to foods that may be enticing but cause us to become overweight (say I looking in the mirror). Increased pollution is another factor Many of us are continuing to live as long as we do because of medication and medical procedures. Addressing lifestyle and environment issues earlier would doubtless be of benefit generally and most likely reduce the incidence of cancer too. How much difference such changes would make after a cancer diagnosis has yet to be fully explored I believe.
Barry
 
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