The importance of rearranging the list of what you really want to talk about with the doctor
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.
To live with cancer is to live with questions. Some of those questions are pretty minor (Will I lose my hair?) and some are serious (What does it mean when the doctor says “progression”?).
But some questions? Some questions are so uncomfortable that even those who need the answers most are not asking.
We make lists of the things that concern us—the scan results, the possibly swollen lymph node, the neuropathy and the cancer-necessitated blood thinner—and too often they are the sort of questions that can be addressed with the facts (or at least the available information) that doctors can readily find or may already know. For me, these questions provide a little bit of absolute knowledge in my life with metastatic breast cancer, even if the answers are not what I’d hoped for. They are, for the most part, cut and dry. They can be addressed with a medication or physical therapy or, when the news is really bad, a change in the cancer treatment.
It isn’t surprising cancer patients focus on these questions. Having answers is having security, while having cancer is insecurity at its most basic level, no matter the stage. So, too often we stick to the questions that can be answered with data and statistics. Sure, an individual patient doesn’t always fall neatly into the statistics, but knowing ranges and likelihoods and probabilities can provide unexpected comfort.
For me, right now, the tough questions revolve around sex and death. Two biggies that are difficult to address under any circumstance made worse by the specter of metastatic breast cancer that is currently (God willing and fingers crossed) under reasonable control. Anyone who’s woken up from surgery to removed ovaries and the sudden onset of real medical menopausal symptoms understands what I’m talking about with the first uncomfortable topic. And death? Well, there’s not a lot to explain about that one.
People who know my medical diagnosis tell me I’m brave, but bravery has nothing to do with it. Faced with either finding a way to live well longer or to die sooner, what would most of us choose?
I know I’m not the bravest because while I have little trouble combing through the details of my medical reports and talking to the experts about what each item means, I sometimes hide from the questions I long to ask.
I’ve searched online for information about broaching difficult subjects with doctors. The first result on my first search made me laugh out loud. Written by a doctor, the essay named the seven types of patients that doctors hate and there I was in practically the first paragraph: the patient who asks about chest pain, for example, for the very first time when the doctor is heading out the door.
While I actually found that insulting — what kind of doctor doesn’t understand the importance of questions that linger and demand to be asked so badly the patient is forced to blurt them out despite the fear? — it did make me look at my fear of asking tough questions from the oncologist’s perspective.
I was lucky enough to get a first-person answer on the very topic of how to bring up difficult subjects at an event for people with metastatic breast cancer, caregivers, and medical personnel held by A Silver Lining Foundation in Chicago. A two-person panel of an oncologist, William J. Gradishar, and a psychologist specializing in psychosocial oncology, Janine Gauthier Mullady, took on the subject and offered some blunt advice.
Dr. Gradishar called these questions “doorknob questions,” which is an apt term. All patients have them and doctors should know to expect them. My personal thought is that perhaps the doctor should factor in an additional three minutes or so from the time his or her hand touches the doorknob—perhaps not the most realistic plan…
But Drs. Mullady and Gradishar suggested that it’s the patient who must take the first step, which makes sense since only the patient knows what is most troubling. Your doctor can only address the tough topics if you “put them out on the table” despite being scared or uncomfortable. Dr. Gradishar acknowledged that patients often come with lists of questions, and the thing to do is to put those tough but must-be-discussed topics at “the top of the list of what’s bothering you.”
I like this straight-forward advice, which implies both the patient and the doctor should respect questions on things that may not be easy to talk about and are as valid as those related to scan results or blood tests. It’s advice I intend to put into practice at my next appointment—right after I take a deep breath before diving in.