By Jill Chapin
January 5, 2012
My sister died exactly one year ago. To those of you who have lost a loved one who was also your best friend, I know you understand the immeasurable sense of loss I’ve felt this past year.
Compounding my deep sadness though, is a sense of outrage that I try to contain, hoping to be able to channel it in a more constructive way.
So for those who are facing, or may some day face a cancer diagnosis, I am going to tell you a story that will help put my mind at ease because it may help you. It’s a story about how bad things can happen in a doctor’s office when patients blindly follow every bit of advice their doctors proclaim without asking questions and investigating other options.
The option to which I am referring, and the only point I am now addressing is the option to simply gather more information. To the extent that you or your doctor lack a curiosity to look beyond standard of care, your life could literally be in danger.
To be more specific, I am referring to a cancer diagnosis when chemo is the recommended treatment. There is a chemo sensitivity test performed in a lab by medical doctors that tests one’s tumor against various chemo and chemo combinations to determine the best treatment option. This information would prove invaluable in avoiding ineffective treatment that not only wouldn’t work but could also morph your tumor into something more aggressive. It could prevent you from undergoing painful and debilitating treatment that would also needlessly decimate your immune system. In other words, if you don’t get the right chemo, it could kill you.
So why am I angry? Because my sister asked her doctor about this test before she began treatment for Stage II breast cancer and was summarily dismissed by him. He said the test was not accurate, which was true a decade or two ago, but is now highly refined. He saw no reason to investigate further. Although she should have asked to see the data to which he was referring, or look up the data herself, she was gripped with a fear that was nearly paralyzing and so deferred to his recommendation to trust his judgment and not bother to gather more information.
She was also told the test was prohibitively expensive. But for him to assume she was unable or unwilling to foot the bill was an audacity that should have raised a large red flag. Sadly, when you are feeling so vulnerable and helpless, it can be nearly impossible to speak up and be your own advocate.
So, like most cancer patients, she blindly followed her doctor’s advice and used the chemo he recommended. A few years later, her cancer returned at Stage III, then developed into Stage IV.
Because my sister was determined to put on a brave face and live her life to the fullest, her family had no idea how dire her situation was until the last few months of her life. It was at that point that her son scooped her up, got her to an oncologist and moved mountains to get that test done and on its way to the lab.
Shortly before she died, the results came back. To no one’s surprise, they showed that her tumor was resistant to the chemo she was given, and was resistant to the next round of chemo her doctor recommended but my sister refused. To make matters unspeakably worse, there were some chemo combinations that would have proven effective, but with days left to live, the results were moot.
The moral of this story? Do not assume that when a patient dies of cancer after treatment, doctors did everything they could. This is not always true, but the medical profession would have you believe that if the patient lives, they are responsible; if the patient dies, it was inevitable.
Without a chemo sensitivity test, your doctors are just guessing, based on statistics and not on your specific tumor.
The best doctors, however, will follow the advice that President Reagan once gave, and is the title of this article: Trust but verify.