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Comparisons of outcomes

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There has been a somewhat wide ranging

discussion over the past few days on the PPML site under a number of headers

which started when a poster asked if there was a comparison in QOL (Quality of

Life) outcomes between PBT (Proton Beam Therapy) and RALP (Robotic Assisted

Laparoscopic Surgery). There is no such comparison and a number of posters

reject PBT on those grounds.

I have always failed to be impressed by any argument

against any specific form of treatment (or even non-treatment) purely in the

grounds that there are no conclusive well-controlled or randomized studies that

demonstrate the outcomes, whether we are talking about long term survival

or side effects. My reason for this

is a simple one – there are, to the best of my knowledge, NO conclusive

well-controlled or randomized studies that provide these comparisons for ANY of

the treatments (or non-treatments). To reject one form of therapy on these

grounds ALONE, seems to me to be illogical and better grounds for rejection

need to be developed to be convincing.

Dr Gerry Chodak made the point during the discussion

that there are studies on quality of life issues. It seems that these are

not randomized prospective studies but retrospective studies. If that is the

case, then their value is diminished – many people reject such studies as

being likely to be biased. This is often especially true if such studies do not

support their point of view. There is, perhaps more acceptance when retrospective

studies confirm their views.

Mike said that he is aware of only one

randomized study that compares QOL (Quality Of Life) outcomes I am inclined to

believe him because his depth of knowledge is immense, so it is of interest to

see his summary of the study to which he refers at http://prostatecancerinfolink.net/treatment/first-line-localized/the-sanda-study/

where he concludes:

<snip>The data provided in this study do

not in any way offer the newly diagnosed patient the sort of perfect

information that he can used to decide exactly which form of treatment is

liable to give him, as an individual, the very best outcome after treatment……All

that the data from this study can do is offer you some general guidance about

what is reasonably expectable on average. The data are what they are. We wish

better guidance could be offered, but it just isn’t available. <snip>

So, if there are no conclusive

well-controlled or randomized studies, How is a man facing a life changing decisions

to gain any insight into potential outcomes? Is there any value in comparing

the outcomes of men who have had treatment by way of anecdotal evidence? Does

this offer ‘some general guidance about what is reasonably

expectable on average.’?

NO, say many people,

including Steve Jordan who regularly tells newcomers to this site <snip> Do

not rely upon anecdotes from other patients, no matter how interesting. <snip>

Dr Chodak says, and I wouldn’t argue with him, <snip>……

reading isolated stories can be very biased. <snip>

Yet, I have little doubt that Dr Chodak would agree

that there is a value in support groups. Certainly Steve Jordan does as he says

<snip> Personal contact with other patients

can be very helpful. <snip> and we see the Deputy Chairman of Prostate

Cancer Institute of Australia

saying at a conference: <snip> The

encouragement we give to individuals who are diagnosed with prostate cancer is

to talk with other patients that have been through the same process……..

because the more involved their patients are and the more they talk to others

with experience, they better off they are. <snip>

What do these men talk about when they meet, if not

the outcome of their choices? Can these be biased – yes they can. Is

there any value in these exchanges – in my opinion there certainly is. Fore

warned is fore armed – our greatest fears are those where we have little

knowledge.

But at the end of the day, no matter what conclusion

a man comes to, based on what he has learned, whether this is from anecdotal

evidence – the stories of his predecessors – or from studies no

matter if they are regarded as flawed, he still has to find a qualified medical

doctor to carry out the procedure he has chosen. There are no do-it-yourself

prostatectomy kits; you can’t go down to Wal-Mart and buy a set of

Brachytherapy needles; you can’t set up a proton beam radiation machine

in your back yard. The final decision should be made based on the detailed

analysis of the man’s disease and the most appropriate treatment

prescribed. As Dr Strum says tirelessly “ASSESS

STATUS BEFORE DETERMINING STRATEGY” . From all I have learned, in most

cases diagnosed today, the strategies and the outcomes are likely to be indistinguishable

from each other.

All the best

Prostate men need enlightening, not frightening

Terry Herbert - diagnosed in 1996 and still going

strong

Read A Strange Place for unbiased information at http://www.yananow.net/StrangePlace/index.html

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