Over the years I have created websites, mailing lists. forums, chats, etc. - but none really for the ladies that we love and who care for us. It always seems they were kind of left out and yet we know that they are a very important part of this disease. It is difficult for some ladies to talk about intimacy between the lady and patient who has prostate cancer and may well be suffering ED because of the disease. Here the Ladies can (and do) talk about everything in a Forum format. If you are a lady or your loved one is a lady - help her help you by having her join this Forum.
A PROSTATE CANCER FORUM FOR LADIES ONLY
Click here for information and joining the Ladies Only Forum. Now we have a Forum dedicated to those ladies who have a loved one with prostate cancer. Here the ladies support each other about the disease and the care for the patient as well as a discussion of various treatments. It is a on-of-a-kind Forum - the only prostate cancer Forum or Group for Ladies Only. If you are a lady and you have now or have had in the past a loved one with prostate cancer - this is the Forum for you. You can ask questions, discuss, hold each others hand, help others and learn about this disease.
Thursday, May 17, 2007
Do the Doctors Manipulate Numbers?
Definition of failure: There are many definitions of failure used by different clinics and different definitions on each of their studies. It appears that with computers they can run their numbers with one definition and if the results do not make them happy - try another definition. This goes on until they find something they like and makes their studies look better than what they really are. (Back to our golf analogy: This is like saying that any ball within six inches, or a foot, or three feet, of the cup is in the hole! Most of us could improve our golf scores by changing the definition of "in the cup.")
Simply put, less stringent definitions of failure tend to result in a higher reported "cure" rate. As you read journal articles be aware of what definition of failure is being used, and how that is likely to affect the reported results.
During the past 10 years as I have read hundreds of studies. I decided that there had to be a way that we could find a common denominator in which we could weigh the various treatments and doctors. I researched every paper I could find that had anything to do with definition of failure for prostate cancer. In doing so I found the necessary data for me to come to some logical conclusions. Now I can look at any study and reduce it down, based on a PSA nadir of 0.2 at 10 years, and compare each of them side by side.
One of the more interesting developments is the use of the ASTRO definition (3). This definition was developed by the Radiation Oncology Society from data of patients who had prostate cancer and who were treated with radiation. However now other modalities of treatments outside of radiation, having realized the great benefit it makes to their figures, have started using the ASTRO definition. Using it in places where it was never designed for and has never been designed for or even tested for. It is in the process of changing yet today as I write this. I would guess they are looking for a better way yet to give them high scores.
Now we are finding that some studies are coming out with a bastardized manipulation of the ASTRO definition that adds things that were never there - and they still refer to it as the ASTRO definition. Undoubtedly this is being done to make results look better.
Who is included and who is not included in a study: Another way to "manipulate" the results of a study is through the definition of which patients are included in a study. What is an average golf score? If we include only touring professional golfers, we will come up with one answer. If we include All golfers who have ever played a round of golf, we will see quite a different answer. Which is the truth? They are both the truth, but based on a very different group of people. If we publish a prostate cancer paper that is based on men with stage T1c disease and Gleason scores of 5 or below, we will get a very different result than if we include all men that present with prostate cancer. Which is the truth? Which group do you fit into?
Look carefully at who is included in the study. Common things to look for: Including men (or at least too many men) in the study who have not been treated long enough ago to experience failure! Including men that can’t yet have failed is bound to increase the "cure" rate. (This is the main reason that studies of less than five years duration are not very useful, and may be just plain misleading.) Another is including only men who have the highest probability of success: Men with low Gleason scores for instance. That, too, will increase the "cure" rate reported.
There are many games to play, just be aware of who is included, and think critically about how this might affect the reported results. The ideal is a study that includes all comers: That is, all men treated at a facility irrespective of stage, Gleason score, etc. (No study is likely to have all comer’s because some refuse to participate by providing on-going information. Yet, a high percentage of those treated should be included.) Yet, there is even a caution here: Some clinics weed out men who are not likely to benefit from their treatment. That, too, will increase the reported "cure" rate.
Simply put, less stringent definitions of failure tend to result in a higher reported "cure" rate. As you read journal articles be aware of what definition of failure is being used, and how that is likely to affect the reported results.
During the past 10 years as I have read hundreds of studies. I decided that there had to be a way that we could find a common denominator in which we could weigh the various treatments and doctors. I researched every paper I could find that had anything to do with definition of failure for prostate cancer. In doing so I found the necessary data for me to come to some logical conclusions. Now I can look at any study and reduce it down, based on a PSA nadir of 0.2 at 10 years, and compare each of them side by side.
One of the more interesting developments is the use of the ASTRO definition (3). This definition was developed by the Radiation Oncology Society from data of patients who had prostate cancer and who were treated with radiation. However now other modalities of treatments outside of radiation, having realized the great benefit it makes to their figures, have started using the ASTRO definition. Using it in places where it was never designed for and has never been designed for or even tested for. It is in the process of changing yet today as I write this. I would guess they are looking for a better way yet to give them high scores.
Now we are finding that some studies are coming out with a bastardized manipulation of the ASTRO definition that adds things that were never there - and they still refer to it as the ASTRO definition. Undoubtedly this is being done to make results look better.
Who is included and who is not included in a study: Another way to "manipulate" the results of a study is through the definition of which patients are included in a study. What is an average golf score? If we include only touring professional golfers, we will come up with one answer. If we include All golfers who have ever played a round of golf, we will see quite a different answer. Which is the truth? They are both the truth, but based on a very different group of people. If we publish a prostate cancer paper that is based on men with stage T1c disease and Gleason scores of 5 or below, we will get a very different result than if we include all men that present with prostate cancer. Which is the truth? Which group do you fit into?
Look carefully at who is included in the study. Common things to look for: Including men (or at least too many men) in the study who have not been treated long enough ago to experience failure! Including men that can’t yet have failed is bound to increase the "cure" rate. (This is the main reason that studies of less than five years duration are not very useful, and may be just plain misleading.) Another is including only men who have the highest probability of success: Men with low Gleason scores for instance. That, too, will increase the "cure" rate reported.
There are many games to play, just be aware of who is included, and think critically about how this might affect the reported results. The ideal is a study that includes all comers: That is, all men treated at a facility irrespective of stage, Gleason score, etc. (No study is likely to have all comer’s because some refuse to participate by providing on-going information. Yet, a high percentage of those treated should be included.) Yet, there is even a caution here: Some clinics weed out men who are not likely to benefit from their treatment. That, too, will increase the reported "cure" rate.
Are Vitamins Killing Us?
I have held for a long time, as many may know, that there is scant evidence in long term studies that Vitamins, Supplements or Diet does much of anything once we have been diagnosed with cancer. My recommendations has been simply take one high quality multivitamin to supplement your diet, if your diet is lacking in these things. My recommendation has been to take the Vitamin pill with the largest meal of the day.
In the case of advanced disease it may be as much value to let the patient be happy with what he eats without restricting the diet or forcing pills down him. The happiness may give him just as long as anything else. Besides in this study giving a lot of vitamins may not be the thing to do.
There is some evidence that aspirin or ibuprofen might well be a preventative of prostate cancer if it is taken from the time of a young man until reaching the age that we see prostate cancer. There is some evidence that here may be other things that we can do along this line to prevent or delay prostate cancer. But even here we do not have a lot of long term studies to prove this and little to none where we use a double blind study.
Now comes a study at http://prostate-help.blogs.com/prostatehelp/2007/05/multivitamin_us.html with news articles at http://prostate-help.blogs.com/prostatehelp/2007/05/mega_multivitam.html and http://prostate-help.blogs.com/prostatehelp/2007/05/study_vitamins_.html that throws out the question that more than 7 doses of vitamins a week may well increase the number of deaths of men with prostate cancer. This is one rather well done study and we would like to see it verified by other studies and we will, in time, have these. With that said we have had previous studies showing that Vitamins and supplements have ltttle effect on this disease.
Some will say - listen to your doctor - but in this area the doctor may not be up on the latest studies and probably has no more experience than many of us in the use of vitamins. they have had little to no training in Medical School about diet and vitamins. In addition the thinking has changed so drastically in recent years the training they might have had is seriously out of date.
I believe it is of value to all men with prostate cancer to cut down on their use of Vitamins and supplements until we have more definitive studies in this field. We have had numerous studies that frankly has said that Vitamins are ineffective and a waste of money - but this is the first study that says we may be killing ourselves by taking large doses. I am not sure what the definition is for "large dose" but I would be very careful in taking more than what is needed to fulfill the minimum daily requirements.
Basically my thinking has not changed - but this study makes me more resolute to try to convince patients that Vitamins and Supplements do us any good and may, in fact, cause harm.
In the case of advanced disease it may be as much value to let the patient be happy with what he eats without restricting the diet or forcing pills down him. The happiness may give him just as long as anything else. Besides in this study giving a lot of vitamins may not be the thing to do.
There is some evidence that aspirin or ibuprofen might well be a preventative of prostate cancer if it is taken from the time of a young man until reaching the age that we see prostate cancer. There is some evidence that here may be other things that we can do along this line to prevent or delay prostate cancer. But even here we do not have a lot of long term studies to prove this and little to none where we use a double blind study.
Now comes a study at http://prostate-help.blogs.com/prostatehelp/2007/05/multivitamin_us.html with news articles at http://prostate-help.blogs.com/prostatehelp/2007/05/mega_multivitam.html and http://prostate-help.blogs.com/prostatehelp/2007/05/study_vitamins_.html that throws out the question that more than 7 doses of vitamins a week may well increase the number of deaths of men with prostate cancer. This is one rather well done study and we would like to see it verified by other studies and we will, in time, have these. With that said we have had previous studies showing that Vitamins and supplements have ltttle effect on this disease.
Some will say - listen to your doctor - but in this area the doctor may not be up on the latest studies and probably has no more experience than many of us in the use of vitamins. they have had little to no training in Medical School about diet and vitamins. In addition the thinking has changed so drastically in recent years the training they might have had is seriously out of date.
I believe it is of value to all men with prostate cancer to cut down on their use of Vitamins and supplements until we have more definitive studies in this field. We have had numerous studies that frankly has said that Vitamins are ineffective and a waste of money - but this is the first study that says we may be killing ourselves by taking large doses. I am not sure what the definition is for "large dose" but I would be very careful in taking more than what is needed to fulfill the minimum daily requirements.
Basically my thinking has not changed - but this study makes me more resolute to try to convince patients that Vitamins and Supplements do us any good and may, in fact, cause harm.
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