There has been information lately concerning contaminated Chinese imports of vitamins, supplements, prescription drugs, pet food, fish and various other food products.
The Chinese government has recently closed 160 contaminated food producing companies - probably only a small part of the total picture - the tip of the iceberg if you will. Unfortunately, I suspect these companies will soon be replaced by thousands more.
It is common knowledge that a large percentage of herbal products imported from China have contained other products including both prescription and non-prescription drugs. Some of the products have contained anywhere from zero percent to a far greater percent of the particular product listed in the contents.
For example, millions of dollars have been made on the sale of PC-SPES, which was sold to men to treat prostate cancer and found to have as many as 4 prescription drugs contained in the product. This was proved in numerous lab tests and the product was removed from the marketplace. We know the drugs _ would, in fact, treat prostate cancer whereas the herbal products included have no effect on prostate cancer. This was represented as a Chinese herbal medicine - it was not. According to expert Chinese doctors, none of the herbal products included would ever be used for prostate cancer in traditional Chinese medicine. It is believed many men have died as a result of taking this product. Currently there are million dollar lawsuits in the courts against this product.
Now, with the above in consideration, recall the recent publicity about the use of multiple kinds of vitamins which leads to a higher incidence of prostate cancer. It is as if the vitamins may be feeding the cancer. You can read more about this at Are Vitamins Killing Us? . I would suggest that you take the time to read it if you have not done so.
This is one time that I am looking for an answer that may not be forthcoming - certainly the two subjects above raised some red flags, at least to me.
Could it be the men in the study who were taking a large number of vitamins, etc. may well be using contaminated products from China and may well be contaminated with something that caused them to have a higher incidence of aggressive cancer?
Could the men, not in a study, be experiencing the same thing? Is it the mega vitamins we may be taking that is causing cancer to begin and causing more aggressive cancers of all kinds? Are these Chinese manufactured products contaminated with products that are causing the problem prior to diagnosis?
Is there a direct link to the above two findings? Is two and two adding up to more than four?
Maybe just maybe these two findings are something each of us should consider and perhaps not take vitamin pills or other Chinese products until the Chinese fix their system (which probably will not happen in our life time). Actually there is very little (if any) scientific evidence created in long term double blind studies that taking vitamins has any beneficial effect on our bodies.
Perhaps the vitamins we think we need are better supplied in natural food products and maybe it is in that food product where the combination of _ vitamins and other things that make the difference. The vitamins alone, in pill form, leave out many other benefits that may be from the combinations of ingredients in the foods themselves.
Something to think about!!!!
Saturday, June 30, 2007
Wednesday, June 27, 2007
PSA - What does it measure?
To All
This is a rather long post with a lot of references to pages on my websites about PSA. It should be read by anyone who has started this prostate cancer process and those who are on line helping others with their decision making process. Every person dealing with prostate cancer should have a full understanding of the PSA as to what it is and what it isn't.
As we all know (but some never seem to get in their mind) that the PSA is not a good marker for prostate cancer - but it is about all we have so we have to use it.
For example we know that most biopsies are made when the PSA climbs over 4.0 yet we know that many prostate cancers are found with a PSA of less than 4.0. We also know that biopsies only catch cancer about 30% of the time - and the men who do not show cancer go away thinking they have no cancer. Yet we know that a biopsy is like sticking a needle in a haystack and could miss a lot more than it finds. We know men who have high PSA's and multiple biopsies and the cancer is not found. They may or may not have cancer - we just don't know. Now these decisions on the diagnosis of prostate cancer are made on the basis of PSA's - any PSA. At the same time we know there are many things that will cause the PSA to rise that have nothing to do with prostate cancer.
After we are diagnosed we watch the PSA and the slightest movement up scares us that the cancer has returned. We seem to forget at that point how inaccurate the PSA is to track our disease. We follow it like a God when in fact it may be more like a devil because it tells us so little. As we get into metastatic disease it is all we have and we do follow it closely.
But lets forget, for a moment, all of the other things that cause the PSA to go up and down and concentrate on only one thing - the use of the various assays for measuring PSA - they are a long way from being the same and even inaccurate among themselves.
PSA results vary considerably due to several factors.
The first is random lab error which is always present because nothing can be measured with 100% accuracy.
The second factor is called systematic error. These are errors that result because one lab may use a different analytical technique (assay) for reading the PSA, or a particular labs may calibrate differently.
Lastly, other events may, and do, influence the PSA level in the blood. Ejaculation, bike riding, or any manipulation of the prostate, such as a DRE, all have the tendency to raise the PSA in the blood. Furthermore, there are theories that the time of day a sample is drawn and the day within a 28 day cycle may affect the PSA level. Also, inflammation of the prostate (prostatitis) is also a frequent source of raised PSA.
LAB TESTING ON STANDARD SAMPLES
The one factor we cannot control is random lab error. Periodically a survey is taken of 1000's of labs to detect their random error in measuring PSA. Identical blood samples are sent to all labs for a PSA reading. In the study available to us at this time, six samples were sent to over 2500 labs, each sample contained a blood sample of a different PSA level from about 0.2 to 19.4. The results reported be each lab were analyzed to obtain the mean reading, the standard deviation from the mean for each lab and for each PSA level (of the six different samples sent to each lab). This allowed for the determination of a 95% confidence range -- a range around the mean value reported that there is a 95% chance the real PSA value falls within (hence, 1 in 20 reported readings will be out of this range). Here is a sample of their data.
Remember each of these labs got the exact same sample to test and report on. They had no idea as to what it should be. Note the Range and compare them against the Mean. Just look at the last line for example the mean was 0.24 and the range was as low as 0.1 all the way to 0.8. The upper range alone is 8 times the lower range. I think that this is perhaps due to the low numbers we are dealing with and is out of line somewhat with the others but it gives you an idea of the variance.
More information on this can be found at
http://www.cancer.prostate-help.org/capsava.htm .
LAB TESTING ON HUMAN SUBJECTS
Now let us look at what it does when it is applied to humans and in addition lets look at the different assays used. Here we want to concentrate on the range within an Assay and the difference between the assays.
This is a rather long post with a lot of references to pages on my websites about PSA. It should be read by anyone who has started this prostate cancer process and those who are on line helping others with their decision making process. Every person dealing with prostate cancer should have a full understanding of the PSA as to what it is and what it isn't.
As we all know (but some never seem to get in their mind) that the PSA is not a good marker for prostate cancer - but it is about all we have so we have to use it.
For example we know that most biopsies are made when the PSA climbs over 4.0 yet we know that many prostate cancers are found with a PSA of less than 4.0. We also know that biopsies only catch cancer about 30% of the time - and the men who do not show cancer go away thinking they have no cancer. Yet we know that a biopsy is like sticking a needle in a haystack and could miss a lot more than it finds. We know men who have high PSA's and multiple biopsies and the cancer is not found. They may or may not have cancer - we just don't know. Now these decisions on the diagnosis of prostate cancer are made on the basis of PSA's - any PSA. At the same time we know there are many things that will cause the PSA to rise that have nothing to do with prostate cancer.
After we are diagnosed we watch the PSA and the slightest movement up scares us that the cancer has returned. We seem to forget at that point how inaccurate the PSA is to track our disease. We follow it like a God when in fact it may be more like a devil because it tells us so little. As we get into metastatic disease it is all we have and we do follow it closely.
But lets forget, for a moment, all of the other things that cause the PSA to go up and down and concentrate on only one thing - the use of the various assays for measuring PSA - they are a long way from being the same and even inaccurate among themselves.
PSA results vary considerably due to several factors.
The first is random lab error which is always present because nothing can be measured with 100% accuracy.
The second factor is called systematic error. These are errors that result because one lab may use a different analytical technique (assay) for reading the PSA, or a particular labs may calibrate differently.
Lastly, other events may, and do, influence the PSA level in the blood. Ejaculation, bike riding, or any manipulation of the prostate, such as a DRE, all have the tendency to raise the PSA in the blood. Furthermore, there are theories that the time of day a sample is drawn and the day within a 28 day cycle may affect the PSA level. Also, inflammation of the prostate (prostatitis) is also a frequent source of raised PSA.
LAB TESTING ON STANDARD SAMPLES
The one factor we cannot control is random lab error. Periodically a survey is taken of 1000's of labs to detect their random error in measuring PSA. Identical blood samples are sent to all labs for a PSA reading. In the study available to us at this time, six samples were sent to over 2500 labs, each sample contained a blood sample of a different PSA level from about 0.2 to 19.4. The results reported be each lab were analyzed to obtain the mean reading, the standard deviation from the mean for each lab and for each PSA level (of the six different samples sent to each lab). This allowed for the determination of a 95% confidence range -- a range around the mean value reported that there is a 95% chance the real PSA value falls within (hence, 1 in 20 reported readings will be out of this range). Here is a sample of their data.
95% Confidence
Labs Low Med. High | Mean S.D. %rekSD Range
2672 10.8 19.4 34.5 | 19.67 2.14 10.9 15.39-23.95
2653 7.2 9.8 18.0 | 9.92 1.11 11.2 7.70-12.14
2689 5.3 7.3 12.8 | 7.36 0.79 10.7 5.78- 8.94
2509 2.1 3.0 4.7 | 3.03 0.33 10.8 2.37- 3.69
2504 0.6 0.7 1.5 | 0.73 0.11 14.5 0.51- 0.95
2591 0.1 0.2 0.8 | 0.24 0.10 40.2 0.04- 0.44
Remember each of these labs got the exact same sample to test and report on. They had no idea as to what it should be. Note the Range and compare them against the Mean. Just look at the last line for example the mean was 0.24 and the range was as low as 0.1 all the way to 0.8. The upper range alone is 8 times the lower range. I think that this is perhaps due to the low numbers we are dealing with and is out of line somewhat with the others but it gives you an idea of the variance.
More information on this can be found at
http://www.cancer.prostate-help.org/capsava.htm .
LAB TESTING ON HUMAN SUBJECTS
Now let us look at what it does when it is applied to humans and in addition lets look at the different assays used. Here we want to concentrate on the range within an Assay and the difference between the assays.
These figures come from the study as follows:
Clin Chem. 2006 Jan;52(1):59-64. Related Articles, Links
Interchangeability of measurements of total and free prostate-specific antigen in serum with 5 frequently used assay combinations: an update.
Stephan C, Klaas M, Muller C, Schnorr D, Loening SA, Jung K.
Departments of Urology and Laboratory Medicine and Pathological Biochemistry, University Hospital Charite, Berlin, Germany.
In this study they looked at the PSA and the %Free PSA in 314 prostate cancer patients (PCa) and 282 non prostate cancer patients (NPCa) and how there blood was read by 5 different Assays. If you want to read the actual numbers you will have to get the actual study but let me give you a few of the findings:
For the PSA they found a overall range in PCa of a low of 4.98 to a high of 7.27. For NPCa they found an overall range of 2.8 to 5.03.
Within the same Assay for PCa there seems to be a difference of about 0.7 across the board. For example the same specimen was measured from 6.5 to 7.27 in one Assay. For NPCa the difference varied from about 0.6 to 1.2 in the individual Assays.
But perhaps the most upsetting is not the range in the PSA as shown above for which we are fully aware of but the range in the %free PSA. For example across all ranges the %free PSA ranged from a low of 8.07 to a high of 14.9 for those patients with prostate cancer and for those non prostate cancer patients the range was 14.4 to 25.3. In each assay the same sample was measured within 2 to 3 points. Look at these carefully and see what differences it might make in the decision making process depending on which Assay was used.
You can see yet another table showing the differences in the PSA by various Assays at http://www.diagnosis.prostate-help.org/assays.htm
I think we will look at the %free PSA in a little different light and wonder where the Assay that was used stands in the line.
When you consider both the LAB TESTING of standardized samples and on human subjects it adds a whole new complexity of trying to understand the PSA measurement. It does make it very clear as to why one needs multiple PSA's using the same LAB and the same ASSAY before making decisions that effect your health in one way or another.
For additional reading on the PSA read:
http://www.cancer.prostate-help.org/capsava.htm
http://www.cancer.prostate-help.org/popsacli.htm
http://www.cancer.prostate-help.org/popsafl.htm
http://www.diagnosis.prostate-help.org/pcpsaid.htm
http://www.diagnosis.prostate-help.org/pcpsaot.htm
http://www.diagnosis.prostate-help.org/assays.htm
Thursday, June 21, 2007
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.
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.
Monday, June 4, 2007
The Way It Is
This is going to be a long post on things I believe, and feel strongly about, in this prostate cancer community. But there will only be a handful who will have the interest to read it through. The ones who will not read are probably the ones who need it the most. Some will read the first paragraph or two and disagree with something and will not read the balance even though it might be important to them. But that is the way it is.
I have been described as "brutally honest" and so I am. I am frequently criticized for what I say and do and believe and it does creates a number of enemies and does irritate many. Many times they have not read the available material, do not study, only assume what someone tells them to be true. I do not deviate from what I believe in but will gladly change my mind when one can prove that I am wrong. I do not deviate from my thinking just to appease anyone. I have done the research, the digging and the studying to back up what I say - I find few others who have. And, you know, I don't really care what those people think of me. My life is too full of pleasure, joy and comfort in what I do, I don't worry about those who have a need to tear me down. Constructive criticism is great but destructive comments are not even worth reading - but if they are misleading to the members - they demand an answer.
I see men who say they have studied this disease extensively for the past "X" months - but really never read a study, may not know what a Free PSA is and what it means. Have no idea about Gleason's grades and other more deadly types of tumors. Men who believe that an RP will cure them with a Gleason of 9. Members who have been on these groups, studied everything and do not know that high Gleason's create low PSA's. Most of the things I send to members to read - are not read - they are too long and involved and takes some concentration. This becomes obvious when someone asks a question when they just received an answer from me in a previous post or email. It also becomes obvious when some one posts information with authority and never back it up with studies but throw out numbers as if they are the truth. There posts are many times misleading and often just dead wrong. Many times it is because they have only read what they want to read, often about only one treatment - the treatment they received. In my mind these can not be left standing on its own and must be challenged - and I do that.
I don't take anything at face value, I rarely pay any attention to data that has not been published in peer reviewed journals. I take the position if they don't publish - they do not have the figures to publish OR they don't want anyone to know there results. If they don't do enough procedures to publish - I don't want them as my doctor nor will I recommend them to others. As far as I am concerned if they don't publish they can perish. Only through understanding how studies work, what they are published in, definitions of failures, past history of other studies from the same doctor, being able to compare one against the other. Only then can one fully understand studies and their inherent problems. Only then can one interpret one against the other. Only then can one break them down to the lowest common denominator and understand fully what games are being played and what the true value is of the study. Only then do the studies have any value.
I read lots of studies and abstracts but not all abstracts have studies behind them. Each year the major medical conventions display "poster" abstracts by the thousands and only a hand full of these will ever make it to a study. Abstracts have little validity until you read the published peer reviewed studies. Sometimes the Abstracts are very misleading. Most of the time you never hear about them again - sometimes one is able to put several things together and make some sense out of them. Even at that poster abstracts are more reliable than internally produced papers because someone has read them and agreed to let them be presented.
It is a simple fact that many if not most doctors lie to their patients in one way or another. Rarely do you find one that is completely above board and truthful. Why do they do this - to them it is not a lie because they simply do not know - they don't read, they don't study, they simply are not interested in finding out. I am not a smart person but I have been told by several prostate cancer specialists I know more about prostate cancer than 98% of the doctors they deal with. That is not a pat on the back for me but it is telling me how dumb most of the doctors are about this disease and all of its ramifications and treatment modalities. It is a pox on the doctors who do not take the time to understand what they are doing - and the patient suffers.
It is strange that we want all kinds of assurances that the car we drive, the equipment we use, is all done with much safety in mind. We want our kids in approved schools, accredited universities. You want to work in a safe environment. We want the products we use to do what they are advertised to do.
But when it comes to supplements we are willing to shove anything in our body based on what a neighbor tells us is good or what someone off the internet tells us it is good. No background, no peer reviewed studies, no guarantee of safety, no idea if it will work or may be dangerous, no idea what may or may not be in it. Our body is the most precious thing we have and we want to protect it until it comes down to the taking of supplements and then almost anything goes. I seem men who are taking over $1000 a month in supplements and I doubt that they are any more healthy than the person out there who eats a good diet and exercises. And now there is evidence that in some cases vitamins and supplements may hasten the death of prostate cancer patients.
When it comes to treatment to protect that body and keep it alive we made decisions based on being impotent, temporary urinary or rectal problems, or other imaginary problems - instead of picking the treatment which has the highest chance to keep us on this earth the longest.
We listen to someone spout off about a particular treatment (conventional or alternative) and tell you how good it is with a 97% cure rate - and we believe them. And yet there is all kinds of evidence to the contrary in published peer reviewed studies. But because these studies are controlled by the "drug company conspiracy" or by the "crooked FDA" they are looked on as having no value. It even seems sometimes if the study is written by their doctor - it is infallible but if it is written by others - it is corrupt and wrong.
And the men die, and they die, and they die, or they wait too late and they die. They have a curable cancer and they do unproven (except in their minds) procedures, treatments, supplements and they die. But you out there never know they die. Seldom does a man post in the groups - that he is dying of this disease - it doesn't happen often. I am in a unique place. I see men and women come in and post to groups and then they are gone. This happens in all groups. And then one day I receive a note from a loved one who says John died of his cancer and I no longer want these posts - please remove his name. There are others that just disappear.
But you read only the good things because that is what the members post by and large. Only in the Advanced Prostate Cancer groups do you get the idea that most of these men know they are dying from this disease and it is a matter of time. Many wished they knew then what they have learned now and they would of done something different - but now it is too late. Many show anger because they did what their docs told them to do - AND IT WAS WRONG!!! And some are dying because they relied on unproven methods, unproven drugs/supplements/ and when they realize it - it is too late.
Another interesting thing is that if you have treatment and the treatment is successful you are willing to say where and what doc treated you. However if you have failed in your treatment, rarely will a member discuss who treated them to begin with. It is more important to know the latter than it is the former but the members will not disclose those names.
It is a cold, cruel prostate cancer world out there knowledge is scarce among the medical professionals. There is only a hand full of doctors out there that I would want to consult with if my primary treatment ever fails - because I know that once my treatment has failed - I am on my way to death from this disease (unless something else kills me first). And dying from this disease is a terrible way to die - usually a long slow process of pain, incapable of caring for ones self, disabilities, etc., etc., etc. I have seen it too many times, too many times.
We have men dying in these groups as we speak. Men who have had their back bones eaten away by cancer, jaw bones eaten away from treatments, liver damage, damage to the bone marrow, tumors spread to the brain, the liver, the kidneys. Believe me if I have a choice of a primary treatments with a 50%, 60% 70% 80%, 85% freedom from disease progression when published in peer reviewed journals (and all things have been brought to a common denominator) - there is little doubt that I would do anything other than the 85%. Yet everyday men chose the lower numbers because it "is right for them". As far as I am concerned nothing is right for me except the very best!!!! Many do not realize that they have only one chance of success and freedom from this disease - miss that chance and you may surely die from prostate cancer.
Men die from this disease when they don't have to. Men suffer from the treatments of this disease and they don't have to. Men make dumb decision on treatment because their doctor led them down the prim rose path. Others make dumb decisions because they listen to no one or to the wrong voices. Others make dumb decisions simply because they do not have the skill or the desire to research. Hopefully what we do in these groups is give that person information to base their decision on and hopefully that information will be unbiased and truthful.
Treatment decision have to be made in conjunction with your medical team. If you have done your research and ask questions that they can't answer - time to find a new team. If they are not smarter than you about this disease - find a new team. If they tell you things that your research tells you are wrong - find another team. Don't rely on any one doc, get second opinions, expert readings of any test that is significant (Gleason - for example). Get your medical records and read them and if you don't understand go to the internet and get answers. A delay in treatment is no where close to the dangers that a wrong decision might be. Develop what the attorneys have always used - you don't ask a question of a witness that you don't already know the answer. Ask questions of the doctors that you know the answers too just to test where they are coming from. If their answers are wrong - head for the door. If there answers are right - ask the questions you want to know the answers to.
So this is what you get from me, if it makes sense to you then continue reading - if it does not you can always leave. This is the way I am and this is the way I will probably stay!!!! I promise to bring you the best information I can gather through my database and BLOGS and make them available to you. There is no place else that you can get so much information, keep up with the latest studies, conference with experts - all under one umbrella - Prostate-Help. The Prostate-Help Gateway is at http://www.prostate-help.org .
I have been described as "brutally honest" and so I am. I am frequently criticized for what I say and do and believe and it does creates a number of enemies and does irritate many. Many times they have not read the available material, do not study, only assume what someone tells them to be true. I do not deviate from what I believe in but will gladly change my mind when one can prove that I am wrong. I do not deviate from my thinking just to appease anyone. I have done the research, the digging and the studying to back up what I say - I find few others who have. And, you know, I don't really care what those people think of me. My life is too full of pleasure, joy and comfort in what I do, I don't worry about those who have a need to tear me down. Constructive criticism is great but destructive comments are not even worth reading - but if they are misleading to the members - they demand an answer.
I see men who say they have studied this disease extensively for the past "X" months - but really never read a study, may not know what a Free PSA is and what it means. Have no idea about Gleason's grades and other more deadly types of tumors. Men who believe that an RP will cure them with a Gleason of 9. Members who have been on these groups, studied everything and do not know that high Gleason's create low PSA's. Most of the things I send to members to read - are not read - they are too long and involved and takes some concentration. This becomes obvious when someone asks a question when they just received an answer from me in a previous post or email. It also becomes obvious when some one posts information with authority and never back it up with studies but throw out numbers as if they are the truth. There posts are many times misleading and often just dead wrong. Many times it is because they have only read what they want to read, often about only one treatment - the treatment they received. In my mind these can not be left standing on its own and must be challenged - and I do that.
I don't take anything at face value, I rarely pay any attention to data that has not been published in peer reviewed journals. I take the position if they don't publish - they do not have the figures to publish OR they don't want anyone to know there results. If they don't do enough procedures to publish - I don't want them as my doctor nor will I recommend them to others. As far as I am concerned if they don't publish they can perish. Only through understanding how studies work, what they are published in, definitions of failures, past history of other studies from the same doctor, being able to compare one against the other. Only then can one fully understand studies and their inherent problems. Only then can one interpret one against the other. Only then can one break them down to the lowest common denominator and understand fully what games are being played and what the true value is of the study. Only then do the studies have any value.
I read lots of studies and abstracts but not all abstracts have studies behind them. Each year the major medical conventions display "poster" abstracts by the thousands and only a hand full of these will ever make it to a study. Abstracts have little validity until you read the published peer reviewed studies. Sometimes the Abstracts are very misleading. Most of the time you never hear about them again - sometimes one is able to put several things together and make some sense out of them. Even at that poster abstracts are more reliable than internally produced papers because someone has read them and agreed to let them be presented.
It is a simple fact that many if not most doctors lie to their patients in one way or another. Rarely do you find one that is completely above board and truthful. Why do they do this - to them it is not a lie because they simply do not know - they don't read, they don't study, they simply are not interested in finding out. I am not a smart person but I have been told by several prostate cancer specialists I know more about prostate cancer than 98% of the doctors they deal with. That is not a pat on the back for me but it is telling me how dumb most of the doctors are about this disease and all of its ramifications and treatment modalities. It is a pox on the doctors who do not take the time to understand what they are doing - and the patient suffers.
It is strange that we want all kinds of assurances that the car we drive, the equipment we use, is all done with much safety in mind. We want our kids in approved schools, accredited universities. You want to work in a safe environment. We want the products we use to do what they are advertised to do.
But when it comes to supplements we are willing to shove anything in our body based on what a neighbor tells us is good or what someone off the internet tells us it is good. No background, no peer reviewed studies, no guarantee of safety, no idea if it will work or may be dangerous, no idea what may or may not be in it. Our body is the most precious thing we have and we want to protect it until it comes down to the taking of supplements and then almost anything goes. I seem men who are taking over $1000 a month in supplements and I doubt that they are any more healthy than the person out there who eats a good diet and exercises. And now there is evidence that in some cases vitamins and supplements may hasten the death of prostate cancer patients.
When it comes to treatment to protect that body and keep it alive we made decisions based on being impotent, temporary urinary or rectal problems, or other imaginary problems - instead of picking the treatment which has the highest chance to keep us on this earth the longest.
We listen to someone spout off about a particular treatment (conventional or alternative) and tell you how good it is with a 97% cure rate - and we believe them. And yet there is all kinds of evidence to the contrary in published peer reviewed studies. But because these studies are controlled by the "drug company conspiracy" or by the "crooked FDA" they are looked on as having no value. It even seems sometimes if the study is written by their doctor - it is infallible but if it is written by others - it is corrupt and wrong.
And the men die, and they die, and they die, or they wait too late and they die. They have a curable cancer and they do unproven (except in their minds) procedures, treatments, supplements and they die. But you out there never know they die. Seldom does a man post in the groups - that he is dying of this disease - it doesn't happen often. I am in a unique place. I see men and women come in and post to groups and then they are gone. This happens in all groups. And then one day I receive a note from a loved one who says John died of his cancer and I no longer want these posts - please remove his name. There are others that just disappear.
But you read only the good things because that is what the members post by and large. Only in the Advanced Prostate Cancer groups do you get the idea that most of these men know they are dying from this disease and it is a matter of time. Many wished they knew then what they have learned now and they would of done something different - but now it is too late. Many show anger because they did what their docs told them to do - AND IT WAS WRONG!!! And some are dying because they relied on unproven methods, unproven drugs/supplements/ and when they realize it - it is too late.
Another interesting thing is that if you have treatment and the treatment is successful you are willing to say where and what doc treated you. However if you have failed in your treatment, rarely will a member discuss who treated them to begin with. It is more important to know the latter than it is the former but the members will not disclose those names.
It is a cold, cruel prostate cancer world out there knowledge is scarce among the medical professionals. There is only a hand full of doctors out there that I would want to consult with if my primary treatment ever fails - because I know that once my treatment has failed - I am on my way to death from this disease (unless something else kills me first). And dying from this disease is a terrible way to die - usually a long slow process of pain, incapable of caring for ones self, disabilities, etc., etc., etc. I have seen it too many times, too many times.
We have men dying in these groups as we speak. Men who have had their back bones eaten away by cancer, jaw bones eaten away from treatments, liver damage, damage to the bone marrow, tumors spread to the brain, the liver, the kidneys. Believe me if I have a choice of a primary treatments with a 50%, 60% 70% 80%, 85% freedom from disease progression when published in peer reviewed journals (and all things have been brought to a common denominator) - there is little doubt that I would do anything other than the 85%. Yet everyday men chose the lower numbers because it "is right for them". As far as I am concerned nothing is right for me except the very best!!!! Many do not realize that they have only one chance of success and freedom from this disease - miss that chance and you may surely die from prostate cancer.
Men die from this disease when they don't have to. Men suffer from the treatments of this disease and they don't have to. Men make dumb decision on treatment because their doctor led them down the prim rose path. Others make dumb decisions because they listen to no one or to the wrong voices. Others make dumb decisions simply because they do not have the skill or the desire to research. Hopefully what we do in these groups is give that person information to base their decision on and hopefully that information will be unbiased and truthful.
Treatment decision have to be made in conjunction with your medical team. If you have done your research and ask questions that they can't answer - time to find a new team. If they are not smarter than you about this disease - find a new team. If they tell you things that your research tells you are wrong - find another team. Don't rely on any one doc, get second opinions, expert readings of any test that is significant (Gleason - for example). Get your medical records and read them and if you don't understand go to the internet and get answers. A delay in treatment is no where close to the dangers that a wrong decision might be. Develop what the attorneys have always used - you don't ask a question of a witness that you don't already know the answer. Ask questions of the doctors that you know the answers too just to test where they are coming from. If their answers are wrong - head for the door. If there answers are right - ask the questions you want to know the answers to.
So this is what you get from me, if it makes sense to you then continue reading - if it does not you can always leave. This is the way I am and this is the way I will probably stay!!!! I promise to bring you the best information I can gather through my database and BLOGS and make them available to you. There is no place else that you can get so much information, keep up with the latest studies, conference with experts - all under one umbrella - Prostate-Help. The Prostate-Help Gateway is at http://www.prostate-help.org .
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