James “Rhio” O’Connor was a patient of mesothelioma, a cancer caused by exposure to asbestos. His doctors originally gave him a prognosis of only months to live, but Rhio ended up surviving for another seven and a half years after he was diagnosed. Rather than accepting the diagnosis and his doctors advice to take a cruise with his wife and then go into hospice care, Rhio was determined to beat the mesothelioma and thus took matters into his own hands. Rhio’s story is important because it shows that you cannot just rely on doctors to know what is best. Doctors are important citizens in our communities, but they are human just everyone else, and have a job to do. Their job is to get as many people well as possible. Not all doctors have the luxury or resources to spend countless hours researching obscure treatments, like Dr. Gregory House in the popular television series “House”. This means that you have to be your own advocate and researcher, and as O’Connor’s story shows, it can pay off.
Only 2,000 people are diagnosed with mesothelioma, the cancer O’Connor had, each year. This is far less than the almost 200,000 women who are diagnosed with breast cancer every year. As a patient of a less common disease, O’Connor had few resources to turn to. Today, when someone is diagnosed with mesothelioma, there is a place to find resources and treatment options (https://survivingmesothelioma.com/basics.cfm). But for many other uncommon cancers and diseases, these resources don’t exist. In order to get well, or at least extend their prognosis, patients and their families must take this research upon themselves, often with little guidance. Fortunately though, the internet has made the search for cures, medicines and compatriots much easier.
The internet is probably one of the best tools a patient with a terminal prognosis can have. Before the advent of the internet, research may involve finding doctors in periodicals and calling them up, with little ability to connect with other patients. But the internet provides a means for small communities to connect with one another, no matter where on the globe they are located. For example, a Google search for mesothelioma turns up 5,000,000 results, far less than the 34,700,000 results that turn up when you type “breast cancer” into Google, but still enough information to at least begin a search. Other rare cancers, such as basal cell carcinoma, a type of skin cancer, and hemangioendthelioma, a vascular tumor, turn up fewer results, but still enough to learn more about the disease and begin to connect to others who have similar experiences.
I think that if I were in a similar situation, I would rely heavily on the support of my family to help me to find out more about the disease I had, and spread the search net as wide as possible. Because of the idea of six degrees of separation, I believe that I would be able to get as much information as I would need to make an informed decision. Especially with the internet, you can connect with other patients and their families, clinicians, specialty doctors and alternative medicine practitioners. I don’t believe in only relying on one opinion or set of doctors because there are always differing ideas and different treatment options out there. As a university student, one large source of information may be researchers at my school, or other universities. There are new discoveries every day, especially in research fields such as cancer that someone’s network may have new information that can help you.
There is not one best way to evaluate all the information you get though. There are percentages and statistics, but they may or may not apply to your case. I believe that the factor that has the most importance is what you are willing to put yourself through and your own belief in the people performing the procedures and in your ability to get better. A positive attitude, whatever science may say about it, is, I believe, one of the best things you can have while facing a dire prognosis. If anything, it would make the time you have left more enjoyable, but more so, it allows you to keep an optimistic attitude and believe that there is a treatment or cure somewhere.
I hope that I never have to deal with a dire cancer prognosis, but I believe that James “Rhio” O’Connor’s path would be one to emulate if I was. He didn’t accept the diagnosis the doctors told him and believed that he could fight and win. There are many pathways to information and one doctor or team of doctors does not always know best. In the age of information, you can find anything in seconds, just by the click of a button. The internet is a huge asset to patients and I believe would be my first point of attack if I were diagnosed.
By: Heywood, Rebecca