There is a 2-decades-long separation between the time I was diagnosed with oropharyngeal squamous cell carcinoma in 1996 and my laryngectomy in 2016. The surgery was necessary because of the long-term damage to my larynx from the radiation therapy I received.
In 1996, I had a low-grade sore throat and a slightly swollen lymph node on the right side of my neck that would not abate. Despite multiple visits to my medical facility’s ear, nose, and throat clinic, I was sent away each time with antibiotics and the assurance that the problem was “nothing to worry about.” When the soreness persisted over months, I had a computerized tomography scan, which showed no evidence of disease. However, I instinctively knew something was very wrong. Finally, I insisted on seeing the head of the otolaryngology department. She suggested performing a needle biopsy. At her office a few days later, she informed me cancer was detected in a lymph node, but the location of the primary tumor was unknown.
Getting a Cancer Diagnosis Is Overwhelming
At the time of my diagnosis, I was 41 years old. I had two young children, aged 8 and 5, and had just started my own boutique documentary film production company. I had a lot to live for and no time to waste. Even though my physician assured me the cancer was curable and my chances for long-term survival were excellent, hearing you have the disease is overwhelming. Initially, cancer was the only word from the conversation that stuck in my brain. Driving home after getting the diagnosis, I wondered if I would be around to see my daughter and son graduate, not from high school or college, but from middle school.
Despite all the trauma and hardships of having cancer and life-altering surgery, it is possible to continue to live a productive and meaningful life.— Bill Brummel
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Within a week, I underwent a radical neck dissection and 45 lymph nodes were removed, 5 of which tested positive for cancer. I then decided to switch my care to an academic cancer center. There, a positron-emission tomography scan revealed the primary tumor in my tonsils. After the tumor was removed, I endured aggressive adjuvant radiotherapy for 7 weeks. It took me 6 months following the radiation therapy to begin to recover from its immediate effects and to start to regain the 50 pounds I had lost during treatment.
Soon, my life returned to the normal challenges and joys of raising a family. I resumed my career and, in the 10 years after radiation therapy, produced some of my most rewarding work. But eventually, the long-term damage from the radiation therapy began to emerge. I developed a hoarse voice, neck pain, and swallowing issues, all because of radiation-induced fibrosis or scarring.
Most seriously, my larynx was gradually losing functionality, making it more and more difficult to breathe. By 2015, I couldn’t climb a few stairs without getting winded. All of this eventually forced me to undergo a laryngectomy, which left me without a voice box and the stark reality that I would be breathing through a hole in my neck for the rest of my life.
Having cancer not only brings your mortality into closer view, it also alters how you see yourself in the world. After my laryngectomy, I was saddled with insecurity, fear, and doubt. I struggled with anxiety and a diminished sense of worth and identity. I found it easier to isolate myself rather than to navigate the world around me. I didn’t want to go out. I didn’t want friends or family to visit me. I didn’t want people to see or hear me.
From the time we learn to speak, so much about how we perceive ourselves is wrapped up in the unique tone of our voice, which expresses to the world our happiness, excitement, and anger. With the loss of that ability, I wasn’t sure how to proceed in my life and in my filmmaking career.
But I was fortunate. I had an excellent surgeon, so the physical result of the surgery, while painful, was excellent. I was also blessed with a supportive network of family, especially my wife and children, friends, and members of a laryngectomy support group, who encouraged me and aided in my recuperation.
I am exceedingly grateful to members of my medical team who helped me take control over my physical and psychological recovery. During this time, my physician, Uttam K. Sinha, MD, Associate Professor of Otolaryngology at the Keck School of Medicine of the University of Southern California, suggested I make a documentary about the psychosocial aspects of recovering from a laryngectomy and living without a voice box. That seed of an idea eventually led to the making of “Can You Hear My Voice?” (www.canyouhearmyvoice.com).
The film follows the Shout at Cancer Choir in the United Kingdom, whose members have all had their voice boxes removed because of cancer. Along the way, choir members’ cancer stories unfold, revealing the emotional struggles with self-identity, self-doubt, and loss they confronted on the road to survivorship. In the film, we discover Shout at Cancer’s concept of using singing techniques to help laryngectomees improve breath control, vocal pitch, and strength, thereby improving their confidence and self-image.
I knew this would be the perfect vehicle to tell the story I want the world to know: Despite all the trauma and hardships of having cancer and life-altering surgery, it is possible to continue to live a productive and meaningful life. It’s a story that triumphantly illustrates the human capacity for resilience in the face of overwhelming adversity.
Feeding the Soul
There is no doubt that cancer changed the trajectory of my life and career. Right before I was diagnosed with tonsil cancer—and years before my laryngectomy—I had decided to launch my own documentary film production company and take control over producing subjects that were important to me. I had just finished filming The Ku Klux Klan: A Secret History for the History Channel when I received my cancer diagnosis.
The experience of going through a radical neck dissection and many tortuous rounds of radiation treatments further solidified my determination to make films that just didn’t feed my wallet but also fed my soul. I wanted to make films that would leave behind a little bit of a legacy—films that my children could look back upon when they were older and be proud of their dad.
When my physician first told me that a laryngectomy was in my future, he also said my quality of life would improve over time. I didn’t believe him. I was in denial. But it turned out he was absolutely correct. Was it worth it? Absolutely.
Mr. Brummel lives in Pasadena, California. He and his films have been recognized with a Peabody Award, two International Documentary Association Awards, five Emmy nominations, and named on an Oscars shortlist. In 2022, Mr. Brummel received the California Speech Language Hearing Association Distinguished Consumer Award.
Editor’s Note: Columns in the Patient’s Corner are based solely on information The ASCO Post received from patients and should be considered anecdotal.