By my math, I had shaved my face almost 9,000 times before something about the routine shocked me out of autopilot. There, one October morning a year ago, was a lump. Right under my jaw, a surprise rise about the size of a thumb knuckle. I put down the razor and felt my heart start to pound.
Somehow, this was scarier than it should have been. I was only 51, felt great and had just come in from a five-mile run. But there I was, still wrapped in a towel as I dialed my doctor.
It was a phone call that would place me in the grip of a type of cancer rapidly growing within a cohort known more for privilege than for peril: healthy, relatively youthful, white men. Over the next several months, I would briefly face mortality, be torn by conflicting advice from eminent experts and find myself in an experimental treatment plan dismissed as radical by much of medicine.
At the start, I just wondered about an infection. I had returned the day before from a reporting trip that included time in three refugee camps. Had I picked up a Syrian flu? Late-onset mumps? But my primary-care doctor seemed to have another worry, and he arranged for me to see an ear, nose and throat specialist the very next day.
Not long after I walked into his office, Arjun Joshi, an associate professor of otolaryngology at the George Washington University School of Medicine, went to the laryngoscope, a camera tube that he fed up my nostril until it emerged in my mouth — a shocking intrusion that would soon become as familiar as brushing my teeth.
A sinus-eye view of the back of my mouth appeared on the monitor behind my chair. Joshi made noncommittal doctor noises, then grew quiet. I saw him look at the two medical students with him and gesture toward the monitor with his jaw. They leaned forward. The tingle of fear grew louder.
“I knew right then it was cancer,” Joshi said months later in an interview for this story. “And I knew what kind.”
What he saw was a small tumor at the deep base of my tongue, which a biopsy and CT scan confirmed within days as a Stage 4 squamous cell carcinoma that had spread to the lymph node in my neck. It was obvious to Joshi because it neatly fit the pattern of the fastest-growing cancer in men, one not caused by smoking or heavy drinking but by the human papillomavirus (HPV), one of the most common sexually transmitted infections. Between 2012 and 2015, its incidence in men jumped by 60 percent, with more than 12,600 American men diagnosed each year, a number that continues to grow.
White, male epidemic
Nearly all sexually active people will contract HPV in their lifetimes, and typically it is entirely harmless. But its effects can lie dormant for decades, and it has long been known to cause cervical cancer in women. In recent years, it has been driving an epidemic of head and neck cancers in middle-class, nonsmoking white males between 45 and 55.
Researchers aren’t sure why it has emerged as it had, but increasing numbers of sexual partners, differences in how the virus affects males and females, changing sexual practices and other factors play a role. The CDC recommends that all boys and girls get vaccinated against HPV by age 11 or 12, before they are sexually active, a step that could significantly reduce HPV-related disease in future generations.
If there was any good news on the day I was told I had cancer, it was this: HPV oral cancers are extremely responsive to treatment. Using traditional techniques, the cure rate is above 90 percent.
“You’re going to be fine,” Joshi said. As the black tide of dread rose around me, I grabbed that phrase like a lifeline from a helicopter. “I’m going to be fine” was embedded in every sentence I ever spoke about cancer to my wife, Ann, our three children, my friends and my colleagues. And I believed it.
Most of the time. This disease’s treatability actually led to the scariest thing I faced as a cancer patient: choice.
As researchers learn just how treatable HPV oral cancers are, they have begun to address the question of overtreatment. Chemotherapy and radiation definitely kill this cancer, but they also expose patients to gnarly — even deadly — side effects. Radiation particularly can damage salivary glands (leading to chronic dry mouth), contribute to future bone damage and, in the worst cases, destroy the ability to swallow and leave the patient dependent on a feeding tube.
Radiologists are quick to point out advances that have greatly reduced those bad outcomes. But even many of those enthusiasts are working to find the lowest exposures that will still zap the fatal disease.
It turns out that cutting back on treatment doesn’t come easily in medicine. “When you’re looking down the barrel of this gun and the probability is you’re going to die, we all say, ‘More must be better,’ ” said Maura Gillison of the Ohio State University Comprehensive Cancer Center and one of the leading researchers in HPV oral cancer. “Backing the therapy down is far more complex.”
For the patient, having options can be agonizing.
The first alternative I learned of was right there at GWU, which has been working on a way to skip radiation altogether. More than a decade ago, even before HPV-related oral cancers were well understood, doctors there noticed how some oral tumors in nonsmokers shrank dramatically under “induction chemotherapy” — that is, chemo given before other procedures are performed instead of in conjunction with radiation.
Over the years, they’ve developed a technique for cases like mine, small HPV-positive tumors that have spread no farther than a lymph node or two. They recommended three courses of chemotherapy, followed by robotic surgery on the tumor and the removal of vulnerable lymph nodes from both sides of the neck, and no radiation. If the lab tests on the removed tissue came back cancer-negative, I would be done except for regular exams and scans.
“I’ll watch you like a hawk for five years,” Joshi said.
Sounded good to me. But I soon learned that GWU’s approach is a true outlier. I asked doctor friends to put me in touch with experts across the country, and I heard a lot of skepticism. Most had never heard of such an approach.
Clearly, skipping radiation made a lot of medicos uneasy.
“It’s still cancer,” said a doctor at Johns Hopkins, where I went for a second opinion. The first advice from Hopkins’s experts was that my tumor wasn’t a good candidate for surgery. Given its location and depth, surgery would put me at risk of losing my ability to swallow. Far better, they said, to go with a tried-and-true six-week regimen of radiation and chemo combined. They pointed to decades of data and thousands of successful cases. GWU, I knew, had only a few dozen, although their success rate was equally high.
The black tide came rushing in. The team at GWU pushed back, insisting that radiation, rather than surgery, was more likely to harm my swallowing. What felt like a choice between death or deformity was being left to a journalist who never got beyond college botany. I changed my mind every 30 minutes. I barely ate. I didn’t sleep.
A reprieve came two days later in a follow-up call from Hopkins. A tumor panel had reviewed my case and decided I was a good candidate for surgery after all. In fact, Hopkins offered me a place in a study of surgical removal of the tumor and lymph nodes, followed by a reduced dose of radiation only if the pathology report showed that some cancer might remain.
Phew! But I passed on that study when I learned that almost two-thirds of its patients needed radiation anyway. By now, I was eager to avoid that if I could do so without risking my life. Still, it was a huge relief to feel that my other option was not completely reckless.
I went with GWU.
A strange beauty salon
In early December, I had a five-hour session in the “chemo room,” a sort of strange beauty salon of large vinyl chairs and IV stands. I watched the first few episodes of “Breaking Bad” (poor choice) as the cisplatin and docetaxel dripped into my chest, along with a cocktail of anti-nausea drugs, steroids and a shot to boost my white blood cell count.
Chemo was a weird flu. For three days, I was tired but not devastated, queasy but not vomiting. By Day 4, I was back at work, my hair growing thinner, my focus a little fuzzy. I did three of those cycles — every two weeks, one on Christmas Eve — and by the final one was as weak as I’ve ever felt. But the swollen lymph node had disappeared. And Joshi’s nostrilcam showed that the tumor had withered completely. He called it a “complete response.”
Surgery came in February. I woke up with Ann holding my hand. Almost right away, I pointed to the water cup, not thirsty but desperate to know if I could swallow. I couldn’t. Someone had lodged a sock in my throat. But the surgical resident nodded. He had seen something good in the attempt. A few hours later, through a searing ache, a molecule or two went down the right pipe. He added a smile to the nod.
I was in four nights, hated them all. But slowly my croaking Truman Capote voice gave way to a Billie Holiday growl. I could get a quarter-cup of broth down with a half-hour of effort. The nurses finally stopped pouring liquid nutrients through the tube in my nose.
Four days later, Joshi walked into the exam room and tossed me the pathology reports. “Enjoy that,” he said. The margins around the tumor were completely clear. Every lymph node was clean, including the one that had blown up. I was cancer-free.
Nine months on, I’m wallowing in normal. I eat lustily, swallow everything and talk in my old voice. Scars have faded, and hair, such as it is, is back. I live in gratitude, for my heroic and loving wife, my brave children, our good insurance and a community of family and friends who wrapped us in love and lasagna. I will never forget the bosses who told me repeatedly that their only concern was my good health.
It was a year ago that I told some of my best friends and running buddies that I had cancer. We had just finished the annual 10K race across the Chesapeake Bay Bridge.
Just recently, we ran that race again. My scare never even came up.