Learning About the Unknown
Before I retired from the Navy, I had no idea what mesothelioma was. Except, perhaps, having some faint recollection of the word from all of the mesothelioma law firm advertisements on TV that I would just tune out.
Maybe you are like me and just zoned out during those commercials, thinking to yourself, that doesn’t apply to me. So, you found something else to occupy your mind during those TV ads. And if you are a veteran having been recently diagnosed with mesothelioma, you may think that all of a sudden, there are all these ads about it on the tube.
But, they were always there…you just weren’t paying attention because, despite the fact that you knew you were exposed to asbestos, you never thought you would get cancer from it.
Then your whole world came crashing down on you when your doctor informed you that you had a cancer caused by asbestos, that you aren’t a surgical candidate, and that there is little he/she can do for you, except perhaps chemo, which will not cure you and serve only to try to slow the cancer growth. You probably didn’t hear a thing the doctor said after that. You just got told you were going to die and there wasn’t anything your doctor or anyone else could do about it.
If this happened to you, you need to know that you are not alone.
In fact, most veterans (and non-veterans) that I talk to tell me that this is almost verbatim, what their doctor told them when they were first diagnosed. The problem is that it may not be true. Many of those told that there was little that could be done, end up having surgery despite what their local doctor initially told them.
Why the Confusion?
Why this happens is still a bit of mystery to me. I’ve had several medical professionals tell me that it is because oncologists make money by giving you chemo, and not referring you to a surgeon.
I’m not cynical enough to buy that one…at least not yet, but I’m getting close. Another explanation is that doctors are like hammers, and every problem looks like a nail. So, if you’re an oncologist, you treat your cancer patients with chemo…it’s what you do. I’m still not buying it.
The other reason, and the most plausible to me is that non-mesothelioma doctors just don’t know much about the disease, and simply aren’t willing to admit to their patients that they are ignorant about the disease and the available treatment options. Fair enough, but I still don’t understand why so many of them refuse to spend 15-20 minutes on the internet researching doctors who do specialize in mesothelioma, and referring their patients to one of those doctors. If anyone has a better explanation as to the cause of this problem, please feel free to email me your thoughts.
Maserati vs Ford
For those of you reading this who I have talked to in the past, you will probably remember the analogy I used to explain why you need to take anything your local doctor says about mesothelioma with a grain of salt, and get an evaluation by an expert. And it goes like this: If you owned a Maserati sports car and took it to a Ford dealership, and the mechanic there told you your car was broken and couldn’t be fixed, who would listen to that guy? The answer is no one would. You would immediately discount anything he had to say and would take your car to a Maserati mechanic. Sure, the mechanic at Ford knows a whole lot more about cars than you do, but he doesn’t deal with a specialized automobile like a Maserati.
The problem is that many of us assume than an oncologist (a cancer doctor after all) must be an expert at your type of cancer, and therefore has a clue as to what he is talking about. But, you’re wrong…he doesn’t. At least, it’s highly unlikely that he doesn’t. I don’t want to disparage all oncologists, as there are a handful of them who do refer their mesothelioma patients to a specialist; but, most don’t.
And I’ve had plenty of vets tell me that they saw a thoracic surgeon who is very well known and respected. And that he is head of the thoracic surgery department at his hospital. OK, great. But, is he a mesothelioma thoracic surgeon, or a general thoracic surgeon? Is he a Maserati mechanic or a Ford mechanic?
What you need to know
So why am I telling you this? Well, the longer I work with veterans with mesothelioma, the more I find myself acting as a medical advocate as much as I am a VA benefits advocate…despite the fact that I have no medical training whatsoever. I just have common sense and a lot of experience to draw from having talked to thousands of vets with mesothelioma over the last eight years.
So, I am happy to assist you in filing a VA Disability or Pension claim. Or help you get Aid & Attendance or Housebound benefits. But, every one of these benefits is about putting money in your pocket. Which doesn’t really do you any good if you aren’t around to spend it. So, allow me to pass on this one piece of advice. Advice that many veterans have told me that if there is but one thing they could say to anyone else who, like them, was given a mesothelioma diagnosis and no hope…get a second opinion by an expert.
If you don’t know how to find one, call or email me.
I will find you one. And frankly, it’s the least I can do.