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 .