I have a few vents, actually. One has to do with the stigma associated with lung cancer. And, I am going to address that one real soon. The stigma is killing people. Lots of people. It is frustrating, maddening, an outrage, and yes, again, deadly.
But, I have a vent for today that is fresh on my mind that I want to talk about. This one may affect people who have had lung cancer for a while and who have been quoted a bit all over the Web and in magazines, etc. Because it may have happened to you, too.
Today, I went in search of an article where I had been featured. In the search box, I typed my name and lung cancer.
That search brought up legitimate sources … and then it showed my name as being included in a book. This book was co-written by a Yale-educated MD (who also has an MBA from Wharton Business School) and a Ph.D. who has reported award-winning health and science segments for Dateline, Today Show and 48 Hours.
First of all, the authors never contacted me for permission to include my information in their book. Perhaps, since I put myself out there on the Web like I do, that is no problem. The problem is that they published completely false information to support their premise.
What was true in the book:
- My name
- My date of diagnosis
- A quote
What was false in the book:
- My diagnosis (supposedly adenocarcinoma (true) with BRAF mutation (false))
- My treatment (nivolumab (true) combined with chemotherapy (false) – in fact, they were not even trialing chemo plus nivolumab when I began my trial, I don’t think)
- The results of this treatment (tumors spread all over my body shrank (false); my tumors remained stable for 4.5 years while I was in the trial testing nivolumab. They did not shrink, they did not grow. They stayed stable. Furthermore, I don’t have tumors all over my body. I had tumors in both lungs and in lymph nodes in my neck. I don’t consider that all over my body and I doubt you do either.)
I am outraged. Absolutely furious. These people who wrote this book apparently have a lot of clout. And, yet, in at least this instance, they are using false information to support their premises.
Now, I don’t know about you, but I don’t deal lightly with liars. Furthermore, when a person is caught in a very obvious, blatant lie, I tend to question every other word out of their mouths (or off of their pen on paper). Without fact-checking every single word in one of the many books published by this duo or in anything they would say in conferences, I would have to believe none of it.
And, here’s the saddest part of all. I have surpassed five years of survival with Stage IV lung cancer. I have lived the majority of that time to the absolute fullest. I have done very well on nivolumab. I have had over 100 infusions of the drug – how many others can say that I wonder?
Maybe I am biased since it is me we are talking about, but I think I have a pretty remarkable story without fabricating new facts. I would not mind being featured in a book without first being contacted IF … IF … IF … the book told the truth.
I see my oncologist on Monday. I already sent him a copy of what was written. I will be very interested to hear his take on it all. My first inclination is to find an attorney who might be willing to sue this duo on contingency. My goal isn’t money. My goal is to shed light on the fact that false information is being published to support premises. That’s dangerous.