Martha lives in Illinois and was diagnosed with metastatic breast cancer in January 2015. She has a husband and three children, ranging in age from 12 to 18, a dog and a lizard.
Positive results, clinical utility, curtailed curiosity – has the desire for good news slowed the path to a cure?
Maybe you're like me, drawn to understanding more about how cancer develops and the science behind our treatments. For me, it's part coping mechanism because I've had to learn to live with metastatic cancer, and one of the ways I do that is by becoming as informed and involved as I can without sacrificing time with my family, activities that are important in my life and, truthfully, my mental health.
But my mental health has taken a hit over the past month as I've listened to some frustrated scientists. I like to imagine modern cancer research occurring at a fast pace of promising developments that will allow me — yes, specifically me but also everyone else – to live a normal or close-to-normal lifetime. I know that isn't the way science works, yet I want it to. That desire, magnified, is possibly behind some of the issues that have been messing around with the view from my rose-colored glasses.
The first occurred as a cancer researcher stood at the front of a recent series of lectures I attended and talked about the need to be a critical reader of cancer studies and articles. One of the speaker's asides during the talk was about how journals, including and maybe especially the most renowned medical journals, want to publish primarily "positive" results. They don't want to devote space to the studies that show something, whatever it may be, doesn't work or does nothing, even if that is information that other researchers, physicians and patients should know.
A related statement, which has also stuck with me, happened during a closing session of those lectures. We were looking over presentation slides that other speakers had shared. The presenter pointed out the obvious (at least the obvious to those in the audience with metastatic cancer): "positive" results are usually not particularly promising from the patient's perspective. Some may show life extensions of a month or a few months, but sometimes can only be measured in weeks. As a patient, I see these developments as additions to what already exists, something for my oncologist and I to throw at my cancer when progression demands a new treatment. In other words, they are not likely to change my life in a meaningful way.
I've been thinking about these two things because while there is so much action and promise in cancer research, there also seems to be some serious questioning about whether or not cancer is just a matter of solving a problem. Do we even know what the problem is? A respected researcher, William G. Kaelin, Jr., recently wrote an essay for the Damon Runyon Cancer Research Foundation in which he talked about basic science research and how it differs from the idea of applying the mindset of engineering to cancer. He argues that we are early in these efforts of understanding the genetics of cancer and scientists need to be able to follow where science leads rather than having the public sector (such as government) or private sector (philanthropic organizations) tie research funding to clinical utility.
The day before I read Dr. Kaelin's essay, I had a conversation with a different cancer researcher who expressed frustration at funding. His frustration stems from the relentless need for positive results, even if that "positive" research never leads anywhere substantive or can even be reproduced by other scientists in a lab or in the clinic.
Statistics and results may be black-and-white, but their interpretation and the need to "sell" that research to obtain publication and funding could be putting pressure in the wrong place, instead of moving the research forward in a way that will end cancer are our demands for good news just slowing down that progress? I wish I knew.
Even when I remove those rose-colored glasses, I believe we will find a cure or a way to turn cancer into a chronic disease. I hope that it happens today. I fear that by valuing only positive results and largely tying funding to clinical utility rather than also seeing the need for deeper scientific knowledge and curiosity-driven research, those developments may happen later than they otherwise would.