Something new is happening and it is bad! I previously believed that when a physician told a newly diagnosed cancer patient they were terminal, the physician was unaware of what was available to treat that specific disease or was trying to protect their ego by forecasting the worst in which case there was no downside. If the patient fulfilled the prophecy, the physician was right and if the patient got well, they were the hero, accomplishing the impossible.
Well, now there is a new twist. “Good” physicians at “good” institutions are telling cancer patients they are terminal and there is nothing that can be done when in reality, there are standard treatments for them. Maybe the odds of successful treatment aren’t good, but they’re a lot better than nothing!
I was in Baltimore recently for the dedication of our Cancer Survivors Park. I met a wonderful 50 year old tall, handsome gentlemen who appeared in perfect health. He advised me that he was diagnosed three weeks ago at a comprehensive cancer center with non-small cell lung cancer and told he could not be cured! He was told he could be treated with chemotherapy which would totally destroy the quality of his life and at the most, it could extend his life a few months. Because of this, he has taken no treatments and done nothing for the past three weeks.
First, I convinced him that if he tried, there was a possibility of success and he agreed to immediately start chemo. Next I wrote to the Board of that center suggesting they police their staff better. My particular problem here is that when someone goes to a major cancer center, the advice they receive is the ultimate. There is no higher authority. If the physician under that banner states unequivocally they are terminal, they might as well order their casket.
Ann Landers published an article in October, 1997 about the Bloch National Cancer Hot Line (800-433-0464) where newly diagnosed patients can speak with someone who has recovered from the same type of cancer. We have received several thousand telephone calls. I personally have talked to over 100. I have been shocked by what terrible medical advice many have received. I will grant that most sound like they have received excellent medical advice and care, but that does not help those who have not, and it is not few in numbers.
All I want is for the patient to have the right to make an informed decision. They can be told their odds are 1 in 12 or whatever they might be and how devastating the treatments might be, but they should have the privilege of deciding for themselves if they want to try to fight or give up and die. I wrote this to the head of oncology of a major comprehensive center. He advised that the problem is not ignorance or egotism, but the pressure by HMO’s and insurance companies to not treat the patient and spend good money unless there is a substantial chance of the patient recovering.
His words were that there was strong pressure to deny treatment unless the patient had a 30 to 40% chance of response! This means that if the chances were one in four, in other words if 250 out of 1,000 would be successful, the patient should be told that there is nothing that could be done. Just think of that. Statistics include those who wish to die, those who do not receive prompt medical treatment, those who try alternative therapies, those who have no support system, and all those who just don’t do anything to help themselves. These people have the right to do what they wish, but those who desire to live are being saddled with these statistics and they are being denied the right to fight for their life.
He said he had received numerous calls from cancer patients around the country stating that they had been told they were terminal when he felt they had a treatable disease. Many of these had been to comprehensive cancer centers. As this oncologist stated, a physician telling a cancer patient their chances were 1 out of 12 could state this optimistically or pessimistically and the side effects were tolerable or horrible. It is in how he says it, not what he says. It is inexcusable to believe that individuals are dying unnecessarily because of cost containment by insurance companies.
Harvard released a survey that indicated the majority of Americans were dissatisfied with their managed care organization. This situation is far worse than being dissatisfied! These cancer patients are being deceived into believing they are untreatable. They have no way to find the truth. They are not being given a chance at having their life saved or extended.
There are two truisms in cancer: there is no type of cancer from which some people have not been cured and there is no type of cancer for which there is no treatment! Please! Please! Please remember those two statements. If a doctor says there is nothing that can be done, he is wrong and he should look up the facts and find out what treatments are being given that could possibly help. One patient was told that no lung cancer patient lives longer than 5 years! Here I am 19 years out and playing tennis daily and enjoying life. Look at any of our Cancer Survivor Parks and find the 5 year survivors of the particular type of cancer on the computer.
Furthermore, it has been clinically proven that the treatments given by an optimistic physician are more effective than those given by a skeptical physician. Now, more than ever, it is vital to find a qualified oncologist who believes he can successfully treat the patient or will try. Everyone should have a right to make an informed decision!