A suspicious lump our dentist noticed on the back of my dad’s throat demanded a follow-up. In the mouth of a habitual 30-some-year smoker, the finding was especially alarming. After a barrage of appointments and hospital visits the news came back: esophageal cancer.
More than a pack a day had turned my dad’s throat black, the cells there dividing uncontrollably. The best immediate treatment was to remove the mass. With such aggressive cancer, there was little chance that anything short of that would be enough to stop the growth. The doctors said it was the only option and we took their advice. In spring 2007, during my senior year of undergrad, my dad underwent surgery to save his life.
The first few weeks were unpleasant, as you’d likely imagine for having slices of your throat removed. A tracheotomy tube pierced his neck, allowing him to breathe. A feeding tube that also bypassed his esophagus was inserted, so liquid nutrition could be fed directly into his stomach. This was reasonable; you couldn’t expect to be eating over a fresh wound.
But as my dad began trying to eat again, almost everything, even the tiniest morsel, would make him choke or cough uncontrollably. We were concerned, but assured that this was just part of the healing process; an obstacle to be conquered.
The following week, my parents attended their first session with a speech therapist. My mom explained that neither of them understood why my dad was having such a difficult time eating. They’d been told that the muscles in his neck and throat had been largely preserved, and so the root cause of this problem, now nearly a month after surgery, was still unclear to them.
The speech therapist casually explained that coughing and choking on food was to be expected – after all, his epiglottis, the flap that covers the airway when swallowing, was overwhelmed by the tumor. Per the reports the therapist had been supplied, his epiglottis had been removed entirely.
My mom recalls looking at my dad, bewildered. Neither his oncologist nor his surgeon ever told us that this procedure was performed. Without an epiglottis, my dad would almost assuredly choke and cough through every meal. He was now on a feeding tube for life.
Weekly chemotherapy and radiation sessions ensued. The radiation damaged his neck and he struggled to speak; his words after that only came out with a breathy hiss as he pressed a finger up to the tracheotomy hole. He’d sit on the couch, the only comfortable position for his weakened body, while my mother and I ate dinner in the kitchen. It was hard to have a conversation with a person who was unable to speak loudly enough to hear from across the room.
In June, after months of recovery and ongoing chemotherapy, the oncology team gave us the promising news that my dad was “stable,” and that a PET scan showed no signs of the cancer. But within six months, it was back, and it was terminal.
As a last-ditch effort to prolong his life, his doctors implanted a shunt into a major artery running through his chest to deliver the chemotherapy; a euphemism for a poison that’s more poisonous to cancerous cells than to healthy ones. The cancer didn’t respond. It now metastasized to his liver, and he routinely had “tumor fevers” – who had even heard of a “tumor fever?” – caused by the body’s panicked response to the last throes of the disease. His temperature routinely shot up to 103° F.
These last two months were agonizing, devastating. My dad, a career construction worker, had changed from a strong, rugged man into one who was frail and pallid. He could barely lift himself from a chair. By February, we knew there was no hope, and he died on Valentine’s Day.
He’s been gone for more than 11 years.
So many of our family’s hopes of him getting better were propped up on a mixture of half-truths, omissions, and a lack of information. The doctors left out the details of upcoming painful procedures or potential risks, and it was precisely these complications that surfaced at our most vulnerable time. We felt betrayed.
During my dad’s struggle with cancer, no one had mentioned that it sometimes can be better to forgo treatment and to enjoy what life an individual has left – to avoid corroding years of good memories with those of hospitals and feeding tubes. Did my dad’s doctors do no harm, as the Hippocratic oath requires? It depends on the sort of life you think is worth living.
In the end, hope was our only guide through the disillusionment and anger we felt over my dad’s treatment. He would have never opted for aggressive treatment if the doctors had simply been honest. Survival was not my dad’s goal. His goal was life.
My dad repeatedly told us, as best he could, that he had started this entire treatment process because he had just wanted to go back to work. If he had known of the complications, or the risk of the cancer returning, he would have refused treatment, and kept working as long as he could.
I’ve seen how devastating cancer can be in many families, among them my own. This experience taught me many things, but maybe the most important is: ask questions. Ask questions of your loved ones and for your loved ones. What quality of life do they want during and after treatment? What are the likely outcomes and complications? How much time will these treatments buy, and at what physical and emotional cost?
Cancer comes with many uncertainties, and many decisions may be unpleasant, even gruesome. But having the appropriate information and discussions may be the most loving thing you can do for the people you love.
Matt Biancalana is a postdoctoral fellow at NYU Langone Medical Center, working as part of a research group within the Perlmutter Cancer Center. His research focuses on understanding how mutations in protein-coding genes leads to cancer progression and disease severity. He continues to investigate new ways to bridge the gap between the medical details of cancer therapies with a more approachable awareness of these treatments.