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Sometimes the best we have is still not good enough
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I have written in this column before about my interest in adolescent and young adult oncology. Adolescents and young adults — defined by the National Cancer Institute as people between the ages of 16 and 39 — have been identified as a high-risk group because of a relative lack of improvement in five-year conditional survival relative to older and younger populations.
Against this background, I have become familiar with two major areas of research interest for adolescents and young adults (AYA) with cancer. One relates to the issue of cancer survivorship and “transition” of patients from pediatric to adult health care systems. The other relates to the impact of life circumstances unique to AYAs — including psychosocial and socioeconomic considerations — on cancer outcomes.
These areas of research are interesting and hopefully will produce findings useful for improving the care of AYA cancer survivors or AYA patients with active disease. That said, these areas of research — and the problem of AYAs as a “high-risk” group — are relatively abstract and epidemiological.
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It occurs to me that the real problem of AYAs and cancer is more immediate, real and emotional than this. AYAs with cancer illustrate the inadequacy of modern cancer treatment and highlight the urgency with which innovative and groundbreaking research is desperately needed.
A personal example
I have also previously written in this column about a best friend of mine from medical school who has metastatic rectal cancer. To protect his identity, I’ll call him “Adam.” Adam is on second-line treatment for metastatic disease. He was recently found to have diffuse peritoneal tumor deposits. Several of his friends, including me, are pooling our resources to help take care of his wife and 3-year-old son after he is gone. Adam’s functional status is still pretty good. He is ready and willing to try whatever off-road or early phase options that might possibly bring him benefit. We pray for a miracle. Those are the kinds of words one might usually expect to hear from patients and families.
I am an oncology fellow. I am praying for a miracle too.
Improving treatment options
Adam’s case has taught me that current state-of-the-art treatment for metastatic rectal cancer is not good enough. I recognize the value of targeted therapies and the tremendous amount of research and patient participation that has gone into identifying and incrementally improving the different lines of therapy for metastatic disease. The extra months of life that Adam will gain from his FOLFIRI treatment will give him precious time with his wife and son. But, at the end of the day, all of these treatments are essentially palliative, even if we are reluctant to admit it. To be honest, it was hard to see Adam’s switch from FOLFOX to FOLFIRI as doing much more than putting a little more time on the clock.
AYAs with cancer get terrible, aggressive diseases. Whether getting biologically aggressive “adult” diseases early in life — breast, colorectal, melanoma, etc — or often refractory “pediatric” diseases later in life — ALL, sarcomas, etc — AYAs often have diseases that are difficult to treat. That means that young lives are ended much too soon; young families are disrupted forever.
Sometimes, appropriately aggressive treatments carry significant and life-threatening risks. I am reminded of my wife’s cousin, who was cured of her leukemia by an allogeneic stem cell transplant but later succumbed to aspergillus infection in the setting of graft-versus-host disease, or of my own patient, who last year died of an infectious pneumonia and respiratory failure after initial induction chemotherapy.
The stories of our AYAs with cancer tell us that we must do better. Treatments for metastatic cancer that are primarily palliative in nature are important and represent terrific progress made over the years in medical oncology research and practice, but they aren’t good enough for patients for whom an extra two years of life still means dying before the age of 40.
Potentially preventable complications of appropriately aggressive therapy that lead to a spouse left widowed and a young child left fatherless illustrate how critical it is to pay meticulous attention to every detail of health care delivery at every step of the way.
I will remain interested in the research questions that are a part of the emerging field of AYA oncology. But stories such as these — in which AYAs with cancer illustrate the human tragedy that this disease represents — will continue to fuel my passion as an oncology researcher and clinician for the duration of my career.