CancerGuide: Researching Your Options
I am convinced that researching my options has been an important factor in my survival. Naturally then, I am a strong advocate of patients doing their own research, including delving into the most recent technical literature on their disease. Helping you do that is what CancerGuide is all about.
At the same time, there are very good reasons why doing this kind of research may not be right for everyone. In this page, I outline the pros and cons as I see them in the hope of helping you to better decide whether this approach is right for you.
It Could Save Your Life
Cancer specialists have over a hundred kinds of cancer to keep up on, and for each of these cancers there are many different situations, each demanding different treatment. No doctor, no matter how dedicated, can possibly keep up on every promising new development for every type of cancer. As a patient, you only have to research one kind of cancer and one situation - yours. Although you don't have the training and expertise of a physician, you do have the advantage of having a lot more time to spend on your one case. All of this means that by researching your disease yourself, you might find a treatment that your doctor doesn't know about that could save your life.
Unfortunately, at least some physicians do not keep up very well at all, and it is very hard to tell if yours does or not. If you have the misfortune to have such a doctor, even a small amount of research may quickly reveal a standard treatment with a higher success rate than what your doctor is proposing. Again, you could save your life.
If you are an HMO member, you have special reason to do some research. The less care an HMO gives, and the less often it refers patients outside their network, the more profit the HMO makes, so there is an inherent conflict between your best interests and the HMO's best interest. This does not automatically mean that HMOs always short change their patients, indeed some patients receive excellent treatment from their HMO. Still, in my experience, HMOs are less likely to tell their patients about promising new treatments or clinical trials, particularly if these treatments or trials are not available within the HMO's network. In this situation, a little research could save your life.
If you have a rare cancer, you also have a special reason to research it. Your doctor probably has little or no experience treating it. Through research, you might find an expert on your disease, and you can find whatever is known about its treatment. Your doctor may have already done this research, but if not, you could save your life.
After my diagnosis with metastatic disease, I was blackly depressed. There were exactly two things that helped. One was physical exercise, and the other was calling some research center on the phone, going to the library, or doing anything that I believed could actually help. I could go from the deepest depression to actual enthusiasm in minutes, just by picking up the phone.
When you get cancer, you lose control over a lot of things in your life. The disease itself can take control away by its symptoms, but the medical treatment can also do the same thing. Being subjected to invasive or toxic treatments and procedures that you don't fully understand, for reasons that aren't really clear to you, can certainly make you feel like everything important that is happening to you is out of your control. Understanding your medical treatment and gaining control over it can be a wonderful antidote to those feelings of helplessness and hopelessness. Understanding your treatment will also help you to do everything possible to make it successful.
You Can Make a More Informed Decision
By reading the literature you can get more information about things like success rates, side effects, and prognosis than you normally would get during a doctor's appointment. This can enable you to better decide whether the treatments that your doctors are proposing are right for you. Much of the same information can be had by asking your doctor the right questions, but doing some research yourself gives you a vastly greater amount of time to think about it. I strongly advise you to discuss the whys of any decisions you come to on your own with your doctor. That way if you make a mistake in interpreting what you find, your doctor will have a chance to correct it.
It Can Be Difficult and Intimidating
Plowing through the thick jargon of technical medical literature isn't easy for anyone, but some people certainly have an easier time than others. Certainly if you don't try, you won't know whether you can make sense of it or not. Don't assume you have to be an intellectual or have a degree in science. Determination goes a long way and when you're fighting for your life motivation is high. I have seen people with very modest educational backgrounds become incredibly educated about their cancer.
This is a good place to mention the value of friends and relatives. If reading densely written technical reports is not your cup of tea, maybe someone you know would be willing to help. In my experience, most friends and relatives wish there was something they could do to help, but don't know what that might be. If you just ask, they'll probably be more than happy to help. Obviously, a friend or relative in the field of medicine or biological science is the most likely to be able to help, but knowledge of any technical field or science can provide an edge. Finally, some of the information you come across will be written for the layman, and you will be able to understand it.
You Might Make the Wrong Decision
If you go it on your own, you could misinterpret what you read and make a bad decision. The solution is not to go it on your own. Be sure to include your doctor in your thinking and decision making, and be sure to weigh his opinion and reasoning carefully.
You Will Have to Confront the Statistics
I know from personal experience how difficult this can be. I was diagnosed with metastatic disease only four days after I read a paper that gave the three year survival for my cancer with metastatic disease as only four percent. Knowing this dismal statistic was terribly, terribly difficult, but I was able to realize that four percent is not zero percent, and also that new treatments could raise these odds.
Understanding what the statistics really mean can allow you to extract hope from despair. The finest writing on cancer and statistics I have ever encountered is Stephen Jay Gould's The Median Isn't the Message. Reading this will give you real hope based on reason.
One additional note; reading out of date statistics can make you think things are worse than they are because treatment may have improved. Never rely on old data! You can also get the wrong idea by taking prognosis information from data that does not really apply to your situation. You may have prognostic factors that change your chances from the general averages, or you might've misinterpreted exactly what situation the statistics apply to. Again, I strongly suggest discussing what you find with your doctor.
Finally, if you don't want to confront the statistics, consider having a friend or relative do the research for you.
There Might Not Be Any Better Treatment
It is quite possible that even after a lot of time and effort, you will find no better treatment then the one your doctor recommended in the first place. You can look at this two ways. If the prognosis is really bad, confirming it could be difficult to take. On the other hand, if the prognosis is reasonable, you can rest assured that you are indeed getting the best treatment available. In either case, knowing that your doctor is recommending the best treatment will also increase your confidence in him (or her).
Finally, although the number of Cons I've listed is more than the number of Pros, this is not something to be decided by the numbers. You have to decide what is important to you.
This CancerGuide Page By Steve Dunn. © Steve Dunn
Page Created: 1995, Last Updated: August 9, 2004