This Presidents Day, please take a moment to reflect on Ulysses S. Grant, the only U.S. president to die of cancer. Pain from oral cancer left him mute and unable to eat solid food. A man whose voice had commanded the attention of kings and queens was left to communicate with his physician through penciled notes. These handwritten missives leave an intimate and harrowing account of Grant’s debilitation and pain. Biographer Horace Green found the majority of these notes “too pitiful for print.”
More than 100 years later, I treat oral cancer patients just blocks away from the location in New York City where Grant’s personal physician attended to the 17th president. Since Grant’s day, we have achieved only modest improvements in oral cancer survival. With more than 40,000 new cases of oral or throat cancer each year in the U.S., many are afflicted and many die in pain. Findings from clinical studies over the past decade reveal that oral cancer is in fact the most painful and debilitating of all malignancies.
As a scientist and surgeon, I study the same cancers that I treat in the operating room. The majority of my research is focused on pain in patients with oral cancer. For example, I recently enrolled “Aaron” in a study to identify pain-producing proteins released by oral cancers. At 67, Aaron was enjoying his first year of retirement until he received a cancer diagnosis. Within months, the aggressive disease metastasized to both sides of his neck. I performed four surgeries as it recurred. Aaron underwent three cycles of chemotherapy and six weeks of radiation.
Three months ago Aaron and his wife arrived in my office looking haggard. Holding up the pain medications I had prescribed, his wife protested, “These aren’t working and we can’t live like this anymore.” The unbearable circumstances left Aaron and his wife terrified; I felt profoundly sympathetic but helpless. Opioids, the strongest pain medications we possess, are an imperfect solution; they become dramatically less effective as tolerance to these drugs develops. No other pain medications are effective for patients like Aaron.
Our inability to effectively treat oral cancer pain stems, in large part, from our lack of knowledge. We know that cancer pain is caused by a unique biological mechanism but we don’t yet understand the intricacies of this mechanism. More research is needed to develop medications that target cancer pain. Far less than 1 percent of the budget for the National Cancer Institute — the division of the National Institutes of Health that funds cancer research — is expended on cancer pain research.
Just as Grant suffered silently, Aaron was left speechless in his final months. One month ago, Aaron succumbed to oral cancer. By sharing the plight of those who suffer from oral cancer I hope to give voice to my patients. The details of a painful demise from oral cancer and from other types of cancer aren’t well publicized, but Aaron’s mute testimony is an important truth in the process of constructing informed policy decisions. As much as we would like to cure all cancers, many forms of this disease continue to inflict misery on our friends and families.
Let’s reduce the devastating impact of cancer by supporting more research on cancer pain. I urge Congress to hold a hearing on quality of life in cancer patients. As a nation, let us hear the voices of those suffering from this ruthless disease. The case for funding research on quality of life and not just on survival will become readily apparent. Science does incrementally improve survival of oral cancer patients by weeks and months but half will not live five years beyond diagnosis. For those patients, this ruthless disease will have them looking for angels or a way to bring them on gracefully.
Brian L. Schmidt, DDS, MD, PhD, is a professor and director at New York University Oral Cancer Center.