Why I Started This Substack
A brief intro
I have never had cancer.
In fact, I haven’t even had a close family member with cancer, in spite of having 10 first-degree relatives: four kids and a wife, three siblings and two healthy octogenarian parents. Although we are all happy about this (and to be honest a bit surprised: my dad’s parents were both dead of the disease before he had his 25th birthday), this lack of intimate familiarity puts me at a bit of a disadvantage when it comes to understanding the most personal aspects of my patients’ cancer experiences.
In an effort to make up that gap, I have read pretty much every cancer history narrative I can get my hands on. The cancer memoir makes up its own surprisingly large literary sub-genre, populated by everything from bleak classics like Solzhenitsyn’s Cancer Ward, obscure masterpieces (e.g., Peter De Vries’ heart-wrenching Blood of the Lamb), and lots of popular takes on the dreaded disease. Most of these I do not recommend to my patients, but one exception is journalist Tom Brokaw’s A Lucky Life Interrupted, which possesses three qualities essential to my endorsement: it is brief, hopeful, and medically accurate.
In the book, he describes his experience with myeloma, an incurable but highly-treatable form of blood cancer. Shortly after diagnosis, Brokaw goes to Mayo for initial evaluation by a myeloma expert and it is during that visit that he recognizes his luckiest break of all: his daughter Jennifer, an emergency medicine physician, attends the appointment and immediately proves herself indispensable:
Here in Rochester, I was learning a lesson in cancer care. It is important to have someone you trust to help manage the case. Jennifer knew what questions to ask, how to interpret the lingo, where to go for the latest reliable information on this cancer. I now use her as a model for others who develop cancer. “Get a Jennifer,” I say, “a physician who is not on the clinical staff, a friend, who can be your ombudsman.”
This is sound advice, but what if you are among the vast majority of patients who do not have a physician among your family members to act as a personal cancer concierge?
During my 17 years as a board-certified hematologist/oncologist, I have had the honor of providing second opinions to hundreds of patients. So as not to be redundant, I start these visits by asking what the patient understands about their cancer, and am always amazed at how often patients are unable to tell me one or both of the most basic, elemental aspects of their illness: the diagnosis and stage of their cancer. This is true even when notes by the (usually very-competent) first-opinion oncologist specifically state—as they nearly always do—that these issues were “discussed in detail” with patient and family members.
I have two theories as to how this discrepancy between the doctors’ and patients’ perception occurs:
The “Far Side” Effect. The first oncologist visit is an overwhelming, life-altering experience. Lots of discussions take place, tests are ordered, plans made, and I suspect that in some cases the poor patient and family members are like that dog in the famous cartoon, hearing only “blah blah CANCER blah blah STAGE FOUR blah blah blah blah INCURABLE blah blah.”
The Far Side Effect can be in play even when the patient/family is a healthcare professional: I remember a few years ago listening to an orthopedic surgeon describing over the phone how he would fix my daughter’s acutely broken collarbone, and at the end of the discussion my wife Sarah asked me if he would be putting a metal rod in her clavicle. “I have literally no idea”, I answered, embarrassed that I had somehow missed such a fundamental part of our discussion. The words “titanium rod” had clearly been transmogrified into “blah blahs” by my overwhelmed brain.
The “Different Languages” Theory. Whenever I bring my computer in for repair I am reminded that information technology professionals have their own language, full of acronyms and shortcut phrases which are meaningful to each other, but not so much for regular humans. Similarly, doctors have developed a vernacular to speak to each other about the illnesses we treat. Although physicians are trained from medical school on to avoid acronyms and jargon when speaking to patients, we all slip up at times. In addition, cancer specialists are notorious for ascribing very specific meanings to common words and phrases, and then forgetting to redefine those terms for our audience. “The disease is progressing on treatment,” for instance, translates not-so-intuitively to the critical message “Your cancer is growing in spite of the medication you are receiving.”
I suspect that the true cause of the physician-patient disconnect is a combination of both of these issues—either way, this problem is not on you, the patient, to fix. It is the healthcare professional’s imperative to make sure that you leave any appointment understanding all salient points from the discussion, as well as the next steps to be taken and why. (My method? I personally write a “chalk-talk” outline of our discussion on a lined pad while I am speaking, and I give that document to the patient upon discharge, to use as a ready-reference and memory aid when they get home.)
I write these pages in the hope that I can be your “Jennifer”—your own virtual concierge to help you ask the right questions and understand the answers. If you haven’t already, start by reading my article 10 Questions Every Cancer Patient Should Ask.
Coming soon: “Common Cancer Myths,” “How To Interpret Your CT Scan Results,” “A List Of Completely Useless (But Commonly-Prescribed) Cancer Medicines,” and of course a “Doctorspeak-to-English” translator. Subscribe and stay tuned!