Another Prostate Cancer Information Resource

John M · Experienced user Joined: 27 Jul 2009 Posts: 59

The European Association of Urology has a website,

http://www.uroweb.org/nc/professional-resources/guidelines/online/

where they have posted their 2009 Guidelines on Prostate Cancer. This is a 138 page PDF which is an exhaustive review of the evidence on diagnosing and treating prostate cancer. This includes ranking of the quality of evidence for different treatment approaches. This is pretty technical stuff, but it is very well organized quality information. When I was first diagnosed, I read the 2007 Guidelines and found them very helpful.

In addition, this same page has a link to a pocket guide, which is a 12 page summary of the key points of the Guidelines.

This publication seem to answer almost every question that is raised in this forum. It's pretty technical, so first reading Walsh's book or one of the other books listed by Replicant would be a good idea. These guidelines are comprehensive, detailed and based on reviewing the entire medical literature. Best of all, they are freely available for downloading.
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John

JohnRH · Regular Joined: 23 Aug 2009 Posts: 42 Location: Denver

Another great ref. for the database. Thx.
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07/2009 DX with Gleason 4+3, PSA 4.1, age 63 1/2.
09/2009 DaVinci RRP; Gleason 3+4; Stage pT2c, NX, MX; neg surgical margins, neg for extraprostatic extension, neg for seminal vesicle invasion; est. tumor involvement 10% of prostate
12/2009 PSA <0.01, 04/2010 PSA <0.01

johnT · Senior User Joined: 27 Apr 2009 Posts: 235

Good report; but not any new information.
A couple of things to note:
This is a Eruopean Urological study and many oncologists and interventional radiologists have a different take on diagnostics, especially the use of PSA kenitics and new scanning technologies.
The cure rate for treated PC in the US far exceeds that in Europe.
Cost containment is much more of a factor in Eruopean Medicne than in the US.(Not a judgement, just a fact worth noting)
PC is a very individualized desease with many varients that don't fit into the standard treatment matrix. (Most urologists have yet to figure this out)
JT
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psa at diagnosis 40 in nov-08
gleason 6 and 7
Treatment choice seeds and IMRT

John M · Experienced user Joined: 27 Jul 2009 Posts: 59

John T,

This isn't a study, and doesn't have anything to do with health care economics. It really doesn't have anything to do with Europe, except that that where the society that made this document is based.

Professional medical societies sometimes review the medical literature to arrive at consensus guidelines. There are standard rules for judging the quality of the different research papers--for example, a randomized controlled clinical trial is a much higher level of evidence than someone just reporting on a group of patients that they have seen in their practice.

This is a Europe-wide professional society of urologists that has reviewed the world (not just European) medical literature to report what evidence there is for different treatment approaches. Other medical societies, in the US, Europe, and other places have published different sets of guidelines for other diseases. All of these groups use pretty much the same rules to rank the value of different research studies.

If these guidelines don't give a particular treatment or diagnostic test the rating that you think that it deserves, it doesn't mean the authors of this article don't like that treatment or test, it just means that there hasn't yet been very good studies done on it.

The American Urological Association has some guidelines, too, and they look pretty useful, but their Guidelines are from 2007:

http://www.auanet.org/content/guidelines-and-quality-care/clinical-guidelines.cfm?CFID=2176511&CFTOKEN=11489135&jsessionid=4a302e83a564791598322d2e6f1d1b4b4b5e
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John

JohnRH · Regular Joined: 23 Aug 2009 Posts: 42 Location: Denver

I think the 12-page Patient Guide at that auanet.org site is yet another good, short, primer for the newly diagnosed or their family.
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07/2009 DX with Gleason 4+3, PSA 4.1, age 63 1/2.
09/2009 DaVinci RRP; Gleason 3+4; Stage pT2c, NX, MX; neg surgical margins, neg for extraprostatic extension, neg for seminal vesicle invasion; est. tumor involvement 10% of prostate
12/2009 PSA <0.01, 04/2010 PSA <0.01

Hawk · Senior User Joined: 22 Nov 2006 Posts: 425

JohnM , good post.

Having said that, I have not read much of this so I have no opinion on the guidelines. I do have an opinion that few studies or guidelines are free of external pressures. This is often true even when there are real efforts at objectivity. My gut tells me that bias from economic pressures likely do impact the formulation of such guidelines much as we find with studies conducted by institutions that have a financial interest.

Any data put forth whether pro or con, always needs to be considered in the light of the pressures that may have a conscious or subconscious impact on those doing the work.
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History: PSA's 6.7 neg. biopsy - PSA 16.6 neg. biopsy - PSA's 8.2, 8.1, 8.7 - Biopsy. 4+4 Gleason 8. Lap RP Apr 2004, age 52 All neg margins, nodes, and structures. (T2a). Post RP PSA: every 6 mo. <.1 until Feb, 08 (46 mos) PSA .1 - I then got sensitive tests (all in 2008) showing:
Feb .06, May .09, Jun .10, Aug .10, Nov .15 -SRT

John M · Experienced user Joined: 27 Jul 2009 Posts: 59

Good point, Hawk. It's not just economic bias. I'm sure professionials tend to be influenced by personal experience, too. Urologists are more likely to be familiar with surgical procedures, for example. Looking at the evidence in a systematic way with predetermined rules is supposed to be an antedote for the fact the everyone has their biases, but I'm sure some biases can creep in. American and European health care systems have really different economic incentives, so maybe comparing the European and American guidelines is a way to at least get at that potential source of bias.

Still, these type of guidelines seem to be the closest you can get to an objective assessment as to the evidence for different treatment options.
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John

johnT · Senior User Joined: 27 Apr 2009 Posts: 235

Being on a board of a major university for 8 years we funded many studies and I can assure you that all had an agenda.

The problem with studies and guidelines is that the reflect the averages; and on the average everyone in the world has one tit and one ball. I want the best and not the average.

Doctors follow the normal distribution curve like most other professions. There are a few 6 sigma doctors that achieve fantistics results. Warren Buffet in finance and Tiger Woods in Golf are examples of 6 sigmas.
Based on my own experience with PC over the last 11 years I have abanded the large institutions and centers of excellence and found doctors in private practice that are exceptional, not average.

Case in point: I had 12 biopsies from 4 doctors, one taught biopsies to other doctors, one practiced for 40 years and the other 2 were robotic surgeons at major institutions. All were negative except the last which showed 2 core, G6 right perphril. A 2nd opinion from a private PC specialist said no way, you have a larger tumor and get a biopsy from Dr Bahn who is the best.
My surgeon said the previous biopsies and MRIS were valid and all guidelines said I should not get another one. I did anyway.
Dr. Bahn's biopsy was completely different; he just looked and took note for about 25 min before he picked up a needle. My other biospies would have already been over. He sid that there was a suspicious area that none of my other biopsies could have hit because of the way urolgists were tranined and the needle angle, He showed me the tracks of the previous biobsy and how it had missed the large area. He then said that only 2 people in the world had the skill to hit that spot and he hit it 3 times. He sid that if I had had 12 more biopsies and another MRIS they would have all misssed it again. He found 3 cores positive, g4+3 and nothing in the area that my previous biopsy showed positive. Just as my 2nd opinion specialist had predicted. That's the difference in using the best vs the average or just the good.

Most sudies and guidelines are 8-10 years old by the time they get to us and the PC world changes daily. I was put into a box by major care centers for 10 years because they were following the guidelines and best practices. I now have learned that there are doctors out there that think out of the box and diagnos and treat individual situations. These are the doctor's I want treating me.
The doctor is much more important than the procedure, technology or guideline if you really want to beat this disease. This is never reflected in the studies, because they are written for average doctors. The good ones have already progressed far beyond the guidelines.
JohnT
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psa at diagnosis 40 in nov-08
gleason 6 and 7
Treatment choice seeds and IMRT

John M · Experienced user Joined: 27 Jul 2009 Posts: 59

Sounds like you've lucked out and found a doctor that helped you out with your unusual situation. That's great! But does that mean that this exact same approach is the correct one for all?

Looking at evidence from the medical literature is a way to benefit from the experience of those who have gone before. If there have been a thousand patients with a problem similar to mine, who've had a particular treatment, then wouldn't knowing how they did with a particular treatment help me to make up my mind as to whether I'd want to get that treatment? Wouldn't that be more reliable than reading one guy's story on the internet?
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John

johnT · Senior User Joined: 27 Apr 2009 Posts: 235

John,
You missed the point. It's not about my treatment; it's about finding and using the best and not using the averages to make decisions.
The best brachytherapsit or radiologist will get beter results than an average surgeon given the same stats. The best surgeon will get better results than an average radiologist given the same stats. The best diagnostician will come to a more accurate staging than an average one.
The best surgeons have a higher cure rate and less side affects than an average one. This critical factor is missing from all the studies and may cause someone to make an uniformed decision.
Someone may forgo surgery because of the high average incontenance rate where the best surgeon may have only a 1% rate. The cure rate and low incidence of side affects from Brachytherapy done by Blasco in Seattle is far greated than the average.
I'm not knocking the value of the studies; just saying that they reflect the averages and one can do much better by using the best.
JohnT
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psa at diagnosis 40 in nov-08
gleason 6 and 7
Treatment choice seeds and IMRT

John M · Experienced user Joined: 27 Jul 2009 Posts: 59

I agree with you entirely that skill of the treating physician is extremely important.

Understanding the evidence so that you can judge whether you are getting good advice from the doctor you are seeing is an important first step--that's what I was talking about--that's these articles are good for. Picking the right doctor so that the treatment that you chose is applied with the greatest skill and the best chance of good results is the important second step. That's what you are talking about. How can you do that?

When I chose my surgeon, I checked him out. Not by reading his website, not by internet testimonials, or newspaper articles but by talking to him, and reviewing and checking out his experience and his outcomes. Also, by talking to a number of people who knew his work directly. In choosing him, I passed over a number of highly hyped providers (including one that you've mentioned in some of your posts who practices 3 blocks away from where I'm sitting now). I've been totally pleased--he's performed exactly as expected.

In the US fee for service healthcare system, doing procedures means money, which is why we see PSA screening at shopping malls, and prostate treatment ads in airline magazines and in the back of the AARP magazine. My personal rule, is that I wouldn't go to any doctor who has to advertise to get patients. The good ones are always busy and don't need to advertise. As for academic docs vs private docs...it depends on the individual doc. However, I'd prefer a doctor who works with a multispecialty team over a lone wolf.

I'd want a doc who does two things: 1) recommends a treatment that is well supported by evidence from published medical studies, and 2) can prove that he/she is experienced with that treatment and has good, believable (not hyped) proof of excellent outcomes.
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John

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