David has a lot of decisions to make as he moves forward, and it’s a lot to be on the shoulders of an 18 year old. He is a caring, conscientious young man, who almost always puts the needs of others ahead of his own. Which in most cases is a good thing, but when you are fighting cancer, you have to put yourself first. Everyone else’s needs and wants are a distant second. I worry for him because he hasn’t embraced that. He still tries to please everyone.
Because I’m worried about him making these decisions, I decided to put down my thought process for him.
It’s complicated because in the end, while this is a life or death battle for us, it is just a job to some of the hospital staff we have to deal with. Hospitals are, after all, businesses, and cancer patients represent a lot of potential income. We would all like to believe that they have the patient’s best interest at heart, but few of them are willing to turn away the potential income by referring a patient to a better facility. If you have a broken leg, this probably isn’t a critical thing, but with brain cancer, even a small misstep could cost someone’s life.
We’ve spent countless hours researching. Trying to learn, in a few months, enough to keep pace with doctors who have studied this for years. We still have a lot to learn, but one thing I do know. The hospital you should be at is the one that spends the most time working on your particular problem. If your problem is life-threatening, this is absolutely critical.
There are plenty of “nice doctors” who are knowledgeable, but if they don’t spend every day working on your issue, then they are not the right doctor for you. And their philosophy should match yours. If you are afraid to try clinical trials, then don’t go to a doctor who advocates them. If you want to try a trial to beat a difficult cancer, don’t go to a doctor who isn’t involved with trials.* (*lots of hospitals have some sort of clinical trial going on, so that alone isn’t a good indicator. You want to make sure they have multiple trials dealing with your type of cancer. It doesn’t matter if they have breast cancer trials if you have brain cancer.)
Anyway, those are my thoughts on the process. Obviously, others will have other opinions, but this is what I would suggest for those facing similar situations.