English Alf said...
A bit of an ethical and moral question here.
Before my Da Vinci in Amsterdam I was given appointments at the hospital three times simply for the purpose of being given information! (one was an evening meeting for patients and partners with a lecture.) On one occasion the doc was running late and I was told about that as soon as I arrived at reception, and it was only about 30 minutes late - he had been called into theatre for an emergency.
During this stage I was asked if I wanted to take part in a clinical trial for a new (anti-incontinence) procedure to give people slings made from part of their own vas deferens at the same time as the RP. They wanted 200 volunteers who would be split into two groups: one would get the new thing and one would not . It was a double blind, so that neither the patients taking part nor the staff seeing you afterwards would know whether you had or had not had the extra procedure.
We were all treated excellently by these professionals, they gave us lots of information and even showed us a video of the procedure. (they even gave us coffee and biscuits.)
Now I am all for being part of the process where current patients do things that will help future patients, on the basis that others have been there before me in ways that have lead to benefits for me, but I declined to take part. (Advances demand new procedures. It must for instance have been a brave guy who was the first person to let himself be given a Da Vinci and I thank him. And my father was a doctor during the 1918/1919 Spanish flu epidemic and he tried a new treatment that was very effective.)
I declined as prior to this everyone had been telling me that I was very young, healthy and fit and would have no trouble recovering from a radical prostatectomy, so I wanted to be able to feel after the op that my recovery was indeed due to that youth and fitness and not due to some fancy new procedure that I may have been given. And I did not want to enter that Russian roulette stage where I might end up in a bad situation because I had had the procedure, but it turned out to have unforseen negative effects, or that I hadn't had the procedure and that it turned out to be the most incredible advance.
I also considered the fact that this additional procedure would make the operation longer.
At no time was I placed under any pressure to take part.
So I can only recommend that anyone taking part in a trial only does so if they get a lot of information up front, and perhaps more accurately if they get given a lot of information about the trial without even asking for it. And get given it in the right kind of way by doctors who treat you as human beings and patients and not as guinea-pigs.
And as for whether you decide to take part once you know the facts, I think that can only be something that each individual can make their own decision about.
In the case of this specific trial: you have to be allowed an escape clause.
If there is no escape clause, then I cannot believe that this trial has been sanctioned by an appropriate (ethical) committee and should therefore be avoided.
I know this is off topic, but your comment about your father treating patients during the 1918 FLU EPIDEMIC jumped out at me. Wow, if I get my numbers right, then your father was 68 years old when you were born about 1961. I did the math, because my 'grandmother' died in the epidemic in 1918 leaving behind three infant children including my mother. My grandmother was born in 1896, my mother in 1915 and I was born in 1941. Did I get this all right? Interesting stuff.
PSA up to 4.7 July 2006 , nodule noted during DRE
Biopsy 10/16/06 ,stageT2A
Very Aggressive Gleason 4+4=8 right side
DaVinci Surgery January 2007
Post op confirms gleason 4+4=8 with no extension or invasion
no long term continence problems
Post surgery PSA continues to be "undetectable"
One side nerves spared
Bi-Mix for ED
born in 1941