Artists/non-Artist Who to believe?

Artists, Non-artist and Who do I Believe

To All Another very long missive.

I set here thinking after reading some posts today and answering a few. The problem is, as I see it:
1. Artists vs. non-artists
2. Studies done by both
3. Studies done by both in the same clinic
4. Are studies or journals equal5. What does it all mean anyway

1. Artists vs. non-artists There is no way that we can ever measure a procedure done by a non-listed artist against those who are listed (see "Physician Artists of Excellence" at http://cancer.prostate-help.org/canames.htm). The reason is that only the "artist" publishes to any great extent. The frequency of the procedure is all important and there are simply not many (if any non-artist who have done 300 in three years with 100 in the past year and have written peer reviewed studies. I think the 300/3 is the least we can expect of any doctor and call him skilled.

2. Studies done by both We do not have studies that are done by two or more artist in their field with exactly the same criteria and exactly the same definition of failure. I can look at studies by Walsh, by Catalona and by Scardino and I can feel very comfortable in rating these great surgeons from best down as Walsh, Catalona, Scardino based on their peer reviewed studies. But are their studies equal, are their patient cohorts equal in every regard, their cut point for failures are not equal, are the years since treatment equal, minimum years of follow-up equal, etc., etc., etc. Without these being equal - it is anyone's guess as to the results. With experience we can adjust in our own minds but that is not statistical proof.

3. Studies done by both in the same clinic When we have studies done at one clinic are the doctors involved equal in skills in their respective treatment modalities. I find where we have a strong emphasis on surgery, for example, there is little emphasis and training and skill in the same clinic for brachytherapy. There is little interest in HDR or Cryo in these types of institutions - they all are 2nd or 3rd class treatments, so to speak. In addition we don't know the selection process in the clinic. For example it is frequently the thinking of these clinics to treat the younger men with surgery and the older men with some type of radiation. The results cannot be compared not can the side effects be compared. I would not, for example, go to Johns Hopkins looking for brachytherapy but their reputation for surgery may make men think they are equally good in every department - they, or others, are not.

4. Are studies or journals equal All is not equal in the lala land of publishing. Anyone can do a "study" and quote from a "study" and the study could be a study of one and it may be just an abstract. To be able to do a study and have it published in a peer reviewed journal is something else again. However there are journals and there are journals. Just because it gets into PubMed does not mean that it is a peer reviewed study (or paper) so one must look to see what journal/magazine it was published in. Not all journals are equal. When one gets ready to publish a paper - one looks down the list of journals and picks which one would be the most likely to accept the paper - may know from the beginning that the leading journals would not publish. And if that fails - moves down the line. One has thousands of journals to choose from. If one wants to work at it hard enough - eventually one could find something that would publish the paper and perhaps just with an editor checking it.

When you read a news release or an abstract you need to know:
a. Was it just an in-house paper.
b. Was there an actual study or just an abstract.
c. Was it published:
a. in a leading peer reviewed journal
b. or in a magazine
c. in a organization publicationd. name of publication and owner thereof.
d. Who are the authors of the study. This does not always work as sometimes a study is written but with agreement someone else's name is used as the author or the lead author.
e. Who paid for the study.


With that information one can begin to rank the importance and the authenticity of the study. But one much always remember if the study did not meet its predetermined guidelines for this study - it become insignificant even though the results look great. Junk in - junk out. To explain further if a study in its statistical make up has determined that it will take 300 participants to validate the study and they only can enroll 150 and continue to do the study anyway - the statistics for a valid study have already been broken and nothing written can validate the study.

5. What does it all mean anyway What does this mean? When you get down to it you cannot compare one study against another, even the same modality let alone different modalities of treatments, unless you have more information that is commonly released. Remember it is the aim of the author to write a study to give the highest results possible from his cohort of patients. He can change these figure is a number of different ways that you may never see unless you have been following the studies for years. Or maybe some inside knowledge which we mere mortals never get. One can never take the word of a patient who has been treated with any particular modality of treatment as he starts with a bias to begin with and almost always that bias shows through and many times he is very wrong in his statements. They typical say they have done a lot of studies and they find this and that and yet they have no appreciation for vagrancies in studies or even how to read and interpret them. Sometime they will throw out figures that have no basis for comparing one against the other - sometimes using their own statistical analysis to make a point - invalid as it will be.

We cannot go to a patient referred to you by a doctor as the doctor would not refer anyone to you that did not have a successful outcome. These groups are not representative of the whole population and they may be heavily biased - sometimes one way and sometime another depending on the strength of one or two members thereof.

One cannot listen to his doctor without knowing that the doctor is very biased toward his own field. Urologist do surgery (they are surgeons), Radiation Oncologists, do radiation, and those who do the other things are looking for something to give them an income. Doctors are the most biased of all - and maybe they should be. They also think that they are the best in their profession and we know better than this.

So what can one do. If he is a member of a group, he is far ahead. Here he can listen to what both sides say knowing how biased they are. He can refer to links that members might post. He can read the posts and find for himself which person seems the most believable and unbiased. He will read the websites that are dedicated to prostate cancer and preferable are not sponsored or paid for my other than the single owner and are not dependant on the parent organization for their very existent. One cannot depend on any website owned by a doctor or clinic (even Universities) to have unbiased reporting and the whole truth and nothing but the truth. They all have axes to grind and points to be made and money to be made.

One thing I am sure of and that is this decision cannot be made in weeks or a month or even three months. To be where you should be and know what you should know takes a lot of studying, reading, looking at actual studies and not just abstracts. It takes listening with a ear that is tuned very carefully to watch out for what is bull and what isn't (and probably most of what you read is). It takes common sense, a brain that can absorb and compare, a knowledge of prostate cancer and the terms we use. When you know this, have this, understand this - then you are prepared to make a decision. In order to make that decision and understand where you are you must know the answers to the following:

- - - - - - - - - - - - - - - - - - - - - - - - - - - - - -
AT TIME OF FIRST DIAGNOSIS FROM YOUR UROLOGISTS
This information should be known at the time from the first exam forward.
1. DRE (Digital Rectal Exam) results?
2. PSA (History if any to time of diagnosis)?
3. Stage (Should be like T1c, T2b, etc.)?
4. Date of diagnosis (biopsy)?
5. Estimated size of the Gland?

FROM THE BIOPSY REPORT
Some Gleason reports are seriously lacking in amount of information and therefore the following may not all be provided. When you ask for a second opinion (below) I would make a request for the information at number 8 and 9
6. Gleason score (Should be like 3+3=6)?
7. How many needles used in biopsy?
8. How many needles were positive?
9. How much cancer in each needles and percent of cancer in each or what percent of cancer overall?
10. How much overall Grade 4 or 5 vs. 3 or below - was there?
11. Was there a third grade and, if so, what percent?
12. What were the findings on the size of the gland?

MOST IMPORTANT: 13. THIS IS AN ABSOLUTE MUST -: 2nd Opinion of Gleason - who and reading. See "Gleason Experts" at http://www.prostate-help.org/cagleas.htm These MUST be used.

FROM OTHER REPORTS Any other procedures that you took because of the diagnosis.
14. Results of a PAP blood test (or any other blood tests) any Bone Scan, CT scan, Endorectal MRI or any other scan or diagnostic procedure. A bone scan should be done if the PSA was over 10 or above. It should be mandatory with a PSA of 20 and above. It should be mandatory for a Gleason of 4+3=7 or above with any PSA.

OTHER INFORMATION NEEDED PERSONAL HISTORY
Information from your past history all needs to be knownto make a determination of treatment.
15. Your age at time of diagnosis?
16. What are your symptoms?
17. Any family history of breast or prostate cancer?
18. Any Prostatitis reported?
19. Any treatment for Prostatitis, if so when? and what?
20. Any BPH reported in the past?
21. Any other treatment for Urologic conditions. (TURP, etc)?
22. Any drug or supplements being taken for BPH (Saw Palmetto, etc.)?
23. Have your changed your diet - it so explain?
24. Are you taking any alternative meds or supplemental vitamins, or other products - list?
25. What prescription drugs are you taking for what condition.?
26. Are you taking Propecia for hair growth?
27. City and state (or country) that you live in, and if not a large city - what large city is it close to?
28. Your race?

REMEMBER THE MORE INFORMATION YOU HAVE THE BETTER CHANCE OF MAKING THE RIGHT DECISION FOR TREATMENT. THE MORE INFORMATION YOU HAVE THE BETTER WE CAN BE OF HELP TO YOU. - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -

In Summary
We can't trust peer reviewed studies, we can't trust other patients, we can't trust doctors - then who can we trust. We have to learn to trust ourselves to get the best information from a variety of sources always weighing one against the other, understanding the biases and come to a conclusion what is best for you. No one else can tell you what is best for you - not even your loved ones. You must enter into this fact finding mission to make your decision on what treatment seems to make the most sense for you and then go for it and never look back.

If you at some point in the future say "I wished I had done something else" then you have failed yourself and will forever be sorry for what you did even though it may have been the best thing ever. If you don't have the time or the will to do this than suffer the consequences of someone else making a decision for you. From this point on it is only your fault that you did not enter into the decision making process and learn what needed to be learned to make a better decision. And that is not to say you can't get help from your loved ones because you can and it can be very valuable. But the final decision has to be yours.