Stages of Mesothelioma
MESOTHELIOMA SURVIVOR PAGE - THERE IS HOPE
Dear Fellow Cancer Patient:
No one likes to read a lengthy letter, but maybe this will help you have a better chance of conquering your cancer and improving the quality of your life. I'm Dick Bloch. In March, 1978 I was diagnosed with terminal lung cancer and given 3 months to live by an outstanding doctor. I am now healthy, cancer free, and devoting myself along with my wife, Annette, to helping the next person with cancer have the best chance of beating it. I'm not saying you can have the same success I did, but if you try, you have a chance.
The biggest and the hardest single thing that you will be required to do in the entire battle is to make up your mind to really fight it. You must, on your own, make the commitment that you will do everything in your power to fight your disease. No exceptions. Nothing halfway. Nothing for the sake of ease or convenience. Everything! Nothing short of it. When you have done this, you have accomplished the most difficult thing you will have to accomplish throughout your entire treatment. And I don't care how serious or how minor you are led to believe your cancer is.
If it is minor, great. Your commitment should not be difficult to abide by. If you are told you are going to die in 3 months or 3 years or whatever, then it makes that commitment that much more vital. There are a lot of "terminal" people alive, healthy and cancer free. There is no type of cancer from which some people have not been cured. There is no type of cancer for which there is no treatment.
To give up requires no commitment. You can stay in the comfort of your own lifestyle. Fighting means a complete change of lifestyle, absolutely leaving your comfort zone. There will be doctors doing things you might not like. There will be lots of work for you to do. There might even be some pain and suffering and certainly, lots of new and unexpected experiences. You must decide that the end is worth the means because you are the only one who can do it. No one else can do it for you. There is no half way. It's all the way. But when it is all said and done, no matter what the results, I've never met anyone who felt it was not the best way. Go for it with no second thoughts or regrets.
Remember, once you have made the commitment, everything else is relatively easy. There will be pleasant experiences. There will be unpleasant experiences. But I can promise you it is not as difficult as making the decision to make the commitment.
The next step you must take is acquiring knowledge. You, personally, must find out all you can about your disease. When you try, you will be amazed how simple and interesting it is, and I assume you have no medical background. First and foremost, talk to your personal doctor who diagnosed you. Be certain to tape record or write down all his answers. You are not a professional and you will be confused and forget. After a while, you will be amazed at what you understand. And remember, this is your life. It isn't your doctor's, it isn't anyone else's. If you want help, you had better help yourself first. Later you can count on others to help you.
Find out what kind of cancer you are supposed to have. This would include type, stage, grade, location, size, spread, receptors, differentiation, virulence, type of treatments it is receptive to, type of treatments your doctor believes it is not receptive to, and anything else your doctor can tell you. Telephone 1-800-4-CANCER. This is the U.S. Government's Cancer Information Service. Everything is free. Ask for a PDQ state-of-the-art cancer treatment printout for your type and stage of cancer. This will show you the recognized standard therapy for your specific disease. Next ask for a PDQ printout of clinical trials for your specific type and stage of cancer from the entire U.S. This will tell you briefly about every experimental therapy currently available for your disease. Get accustomed to calling 1-800-4-CANCER for most things you want to know and be very specific in what you request. The wonderful people there are trying to help you but they can't guess what you're thinking.
Call the Cancer Hot Line at 800-433-0464 to request a copy of Fighting Cancer and to ask for a list of institutions that provide a multidisciplinary second opinion.. All of this and much more is yours for the asking.
PDQ, written in understandable English, will give you a great deal of information on your disease. It will tell you how it is staged and what the overall statistics on your specific stage are. Remember, you are not a statistic. If you make it, your chances are 100%, if you don't, they are 0%. There is no in between.
Trials are a wonderful thing. For purposes of discussion here, there are fundamentally two types of trials. First, there are trials of experimental treatments for generally difficult types of cancer. The procedure is to usually start off with the state-of-the-art therapy. If that should fail, you are switched to the next line of defense. If that fails, you then go to the third line, etc. After all standard therapies have been exhausted, go for experimental therapies. Clinical trials are undertaken when there is a strong possibility that the new approach will improve cancer treatment. Each clinical trial offers you a chance to live. It works on the drawing board. Maybe it can work with you. You have nothing to lose.
The second type of trial is a randomized or sometimes called a double blind trial. This is where there is a difference between two or three types of treatments or dosages or methods and it is desired to find out which is better. Absolutely no one can say for sure that one is better than the other. So they ask individuals to volunteer where they have no real preference and receive one of the methods, possibly without even their knowledge of which they are receiving. Then the results are monitored to find out which is better. For example half the participants might receive a dose each month and the other half might receive 1/4 the dose each week to see which group does better. Maybe half would receive their treatment in the morning and the other half in the afternoon. Either way, what you are doing is possibly helping those who are to come after you and in no way hurting yourself. Patients who participate in trials have the opportunity to receive the most advanced care available - either the new treatment or the best standard therapy. If the new treatment is successful, study patients are the first to benefit; and they have the satisfaction of helping themselves and others.
Assuming your doctor is not a board certified oncologist (a doctor who specializes only in the treatment of cancer), because very rarely does an oncologist diagnose cancer, request that he call one in. Talk to this doctor and get the same information. Again, be certain to write all answers. If you relate well to this qualified physician and he believes he can successfully treat you, have complete faith in him and do everything recommended.
If you do not relate well to this doctor or do not have faith in him or he does not believe you can be successfully treated, go for a true second opinion. That means leaving the comfort of your original doctor and hospital and going across the street or across the city to a different medical system. The best you can do for yourself would be a "multidisciplinary second opinion". This is by one of the institutions given to you by 1-800-433-0464. There you will be allowed to sit with your family and friends and hear your case discussed by independent specialists from each type of cancer medicine. They will tell you everything about your disease and answer any questions you or your family have openly and honestly. You will hear all your options.
If you are unable to get a multidisciplinary second opinion, find a second oncologist totally away from your present doctor or hospital. Get the same information from him. If again you get the impression that this physician can not successfully treat you, you're not through.
Using PDQ protocols, look up who is doing the most work in your type of cancer and call them on the telephone explaining your problem. Ask them straight out if they believe they can successfully treat you. Successfully treating you might not necessarily mean cure in your specific disease. It might be "control", it might be remission, it might be holding it where it is without getting worse. It is amazing how a qualified specialist can accomplish things a less skilled individual does not believe can be done. With the help of your telephone find the most skilled specialist who believes he can do the most for you and then go to him to be certain it is what you want. Then place all your faith and efforts with this individual to help him accomplish what he has set out to do for you.
If you follow our suggestions, initially you did the most difficult single thing in the whole battle - you made a commitment to do everything. Second, you got yourself the best possible medical attention. Now it is time to rationally plan the rest of the actions necessary to complete your commitment. You want to do everything and leave nothing out that could possibly help.
There is a saying that it takes 6 things to beat cancer. First is the best possible medical treatment. Second is the best possible medical treatment. Third, fourth and fifth are the best medical treatment. Sixth is a positive mental attitude. Without all 6, you don't have a chance. But look at it in that perspective and relative importance. A positive mental attitude is not burying your head in the sand and saying' "I'm going to get well." It is doing everything within your power in addition to medicine to help yourself recover.
That "everything" is to thoroughly read and digest the book, "Fighting Cancer" that you received by calling 800-433-0464. It is written in plain English to help you understand your disease and do everything in your power to help you fight it. The last chapter is a check list. Make absolutely certain that you have checked each item in the last chapter. This is for no one's benefit but your own. It is your life.
Fighting cancer is not a simple matter of thinking positively,
wishing it away and saying, "Hey, doc, cure me." It is a matter of
knowledge. It is a matter of educating yourself about every detail and
mustering all your resources. Use every drop of energy in an organized
fashion to constructively concentrate on getting rid of cancer. Most
cancers can be successfully treated, but generally you have only one
chance. If you miss that first chance, if you don't do everything in
your power, often there is no second chance. This is why no cancer
patient can afford the luxury of looking back and saying, "I wish I
would have...." Never look back. Concentrate on this moment forward and
do everything in your power. There is no downside risk. Now you may have