This post was first published on The ASCO Post, November 25, 2022. It has been edited for content. The ASCO Post, in partnership with the American Society of Clinical Oncology (ASCO), communicates news of evidence-based multidisciplinary cancer care to a broad audience of oncology professionals and ASCO members.
Bill Brummel is a documentary producer, director, and cancer survivor living in Pasadena, California. He and his films have been recognized with a Peabody Award, 2 International Documentary Association Awards, 5 Emmy nominations, and named on an Oscars shortlist. In 2022, Mr. Brummel received the California Speech Language Hearing Association Distinguished Consumer Award.
There is a 2-decades-long separation between the time I was diagnosed with oropharyngeal squamous cell carcinoma in 1996 and my laryngectomy to remove my larynx, or voice box, 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 go away. 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 computed tomography (CT) 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 that 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 2 young children, ages 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.
Within a week, I underwent a radical neck dissection during which 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 (PET) scan revealed the primary tumor was in my tonsils. After the tumor was removed, I endured aggressive radiation therapy 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, but 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 successful. 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 recovery.
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 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 my film, Can You Hear My Voice?
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 people who have received a laryngectomy improve their 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 wanted 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 a documentary 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 therapy further solidified my determination to make films that didn’t just 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 for.
When my doctor 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.