(This article was originally published by Critical Mass.)
My name is Mark Lewis and I have a confession to make: I arrived late to the party of adolescent/young adult (AYA) oncology, bashfully and in disguise.
I am an adult oncologist, meaning that my practice is medically and legally confined to patients 18 years and older. But I am married to a pediatrician, and I understand that cancer, in all its terrible callousness, shows no respect for age; it can burst forth in the blood of an infant just as catastrophically as it can in the bones of that child’s great-grandfather.
My wife was one year ahead of me in our training as doctors, meaning that as I entered the fourth and final year of medical school, she was starting her internship, the demanding transition in a physician’s career from didactic education to the indelible lessons of hands-on experience. Her very first assignment in residency was a grueling month in the pediatric oncology ward. She came home in tears at what she saw there, bearing witness to the children with acute leukemia and the intense treatments they endured. We cried together at what they had to suffer to achieve remission but also marveled at the legacy of Sidney Farber: that the youngest among us could be cured in the crucible of high-dose chemotherapy, demonstrating incredible resilience seemingly beyond their years. I knew already that I was interested in cancer medicine, but my tenderhearted wife’s accounts of pediatric oncology were sufficiently harrowing that, with no small amount of cowardice, I left that challenging work for more courageous physicians.
I spent the next seven years in my own residency and fellowship exclusively treating adults. It never seemed fair that anyone would develop cancer but, to a coldly clinical eye, it seemed less shocking to find a tumor in a 75-year-old smoker than a 16-year-old would-be track star; the shadow of lung cancer on a chest X-ray is somehow easier to rationalize than the sunburst of osteosarcoma in an adolescent femur. While my training in oncology was, by design and necessity, confined to the care of “sick grown-ups” (as my children call them), I heard rumors from the hematology department about pediatric regimens for acute lymphoblastic leukemia (ALL) achieving great success in young adults; one of my professors at the Mayo Clinic, Dr. Mark Litzow, told me about his promising work in applying chemo protocols from the Children’s Oncology Group to ALL patients up to the age of 40, with survival rates far surpassing those of young adults treated on a traditional adult protocol. Such research struck me as a remarkable paradigm shift—the Berlin Wall crumbling between pediatric and adult oncology, but I still felt more comfortable on my side.
Fate has a funny way of making you face your fears (see also: my pet theory that claustrophobic patients undergo more MRI scans). While I was still at Mayo, I diagnosed myself with a tumor syndrome, inadvertently unmasking a clandestine AYA patient. The autosomal dominant inheritance pattern of my disease, multiple endocrine neoplasia type 1 (MEN 1), also meant that I had passed the mutation on to my young son, forcing my suppressed interest in pediatrics to resurface. With clarity born from pain, I didn’t even have to look outside my own family to see the continuum of cancer. From the generations already lost too early to the disease, then on to me, then on to my boy, we were a single tainted bloodline, and the common bond—our family curse, as it were—made the distinctions in our ages seem arbitrary at best. I realized that the membrane separating pediatric & adult oncology, while still in place for some very good reasons, is permeable and that we stand to learn greatly from shared experience across the barrier separating youth from adulthood.
It is very difficult – impossible, in fact – for any one physician to treat the entire daunting spectrum of human pathology. Too much medical knowledge exists now for a single mind to master, and out of this information overload arose subspecialization, that we might focus our sights on a narrower field of vision, like a surgeon donning loupes in the operating room to enable greater precision. But this magnification should not make us myopic; our compartments should not preclude the interdisciplinary exchange of valuable findings. To me, the purpose of AYA oncology is to determine, both retroactively and prospectively, how best to treat this distinctive patient population that has traditionally found itself betwixt and between the binary age categories of cancer, blurring a once-bold line drawn between the silos of pediatrics and adult oncology.
With some trepidation, last year I accepted the chair position in AYA oncology for SWOG, one of the world’s largest cancer research networks (http://swog.org), alongside my co-chair, Dr. Becky Johnson, a pediatric hematologist/oncologist, and with the pledged support of SWOG leadership. An exciting initiative is already underway in which SWOG is working in an Intergroup collaboration with COG and ECOG/ACRIN to improve the standard of care for AYA patients with acute myeloid leukemia (AML). In one of the most enlightening examples of the systemic challenges, before the researchers could proceed, they had to start from the ground zero of establishing a common language between pediatric and adult medicine. Similar to the British use of “centimeters” while Americans use “inches” to perform the same act of measurement, metrics of normalcy and response were different in the two worlds; neither was right or wrong, they were just different, and resolution was required to move forward in the grey zone of AYA.
Other areas of active and upcoming research focus include: understanding the worrisome increase in prevalence of colorectal cancer in AYAs, and the ways in which AYA patients have unique needs when facing the end of their lives compared to older adults. Each of these efforts is being spearheaded by subspecialists with tremendous expertise in their respective fields, while AYA oncology itself remains a cross-cutting, histology-agnostic committee within SWOG.
Most of all, I stand to learn from the patients themselves. I believe that we have yet to harness the full power of social media to connect us to the very people we aim to serve better. While issues of confidentiality and consent are always a concern in digital interaction, I think we are silencing the most important voices if we do not listen to the savvy and engaged AYA community as we formulate the right questions to ask in these patients’ care and then answer them through well-designed clinical trials.
I may be late to the party, but it is far from over and I am thrilled to see what happens next. This wallflower is ready to talk.
Dr. Mark A. Lewis is an assistant professor in general & gastrointestinal medical oncology at the MD Anderson Cancer Center in Houston, Texas. He is double-boarded in hematology/oncology after completing a fellowship at the Mayo Clinic in Rochester, Minnesota, where he was chief fellow in that training program. He has a passionate interest in patient-doctor communication, including online dialogue, and moderates a Facebook group for patients with multiple endocrine neoplasia, a rare tumor syndrome that personally affects him and his son. He is also active on Twitter as @marklewismd. He is co-chair of the Social Media Working Group for SWOG, one of America’s largest cancer research cooperative groups, and co-chairs their Adolescent & Young Adult Cancer committee as well.