This is a subject I should have covered sooner, but I was too busy breaking the rule and learning first hand why it is one to share. When I left my oncologist office for the very first time, he told me something simple: “You aren’t statistic and I’m not a fortune teller.” In other words, beating cancer isn’t about odds; it’s about fighting for your life in a way you’ve never had to before and hopefully never will again. It is about believing in your ability to beat the odds (whether you know them or not) and having the best support humanly possible.
To keep your morale up, he had one other recommendation: DO NOT GOOGLE –perhaps less of a suggestion as a rule. It wasn’t the first time since being diagnosed I had heard these words. Doctors that I worked with at the hospital would happily start to answer my questions until I explained I was the patient and wanted to know more about my tumor and the survival rates. They, too, would turn to me very solemnly, wish me luck and tell me to stay away from the computer. Curiosity is not a good thing when reading about a diagnosis that pertains to you. Knowledge isn’t power, in this case; it is more a detriment.
I tried to behave. A quick Google on adenocarcinoma taught me that it was a tumor that normally grew in the lining of organs and originated in glandular tissue. Nothing bad there, right? And the source was Wikipedia, so it had to be correct…right? I could stop there and not look up anything more. I just needed to know what I was fighting. Once I knew, I could easily beat the enemy.
Until, that is, I started doing desk duty and came across the term adenocarcinoma in one of every five charts. Suddenly, the word was everywhere and these older people weren’t doing quite so well. Many returned to the hospital several times before family members convinced them to enter hospice. One even died while waiting for hospice to arrive. My heart started thudding in my chest nervously with every mention of cancer; I didn’t want to become one of those statistics. I wanted to survive for sure and these files weren’t leading me to believe that was going to be a possibility. Nervous was definitely an understatement.
Here is the number one reason your doctor tells you not to Google. News on the internet is never good. If you can’t read medical journals, you are inundated with information from studies about tumor treatments that worked and didn’t. People that survived and didn’t. Survival rates that just make you want to throw in the towel before you even try. For instance, one study showed the survival rates for my tumor, especially when the primary source wasn’t found, were less than five months. Who wants to read that? How do you motivate yourself to push past that knowledge and fight a battle that seems already lost? Most of this information is not the full journal publications and require quite a bit of knowledge from the medical field to muddle through. Most of the “watered down” sites, such as Web MD, simply describe the disease and the process without the prognosis. Googling for survivors of the disease doesn’t always fare better. Occasionally there is luck in finding one or two brave souls that have shared their story with the world, but mostly it’s a big empty hole that doesn’t foster must hope.
The rule of no Googling your disease is a valid one. Stay away from the search engines, books and magazines. Let the doctor lead your knowledge. If you have questions, ask the person that happened to go to medical school; they’ll explain it best. And remember, no matter what the stats you stumble upon say (because I know you too will Google, it’s human nature), you can beat the odds. You aren’t a number; you’re a person and one that is going to beat cancer.