Margaret Shepard (@margieshepard) published a blog post · December 29th, 2012
Scuba diving and fine dining are still on the menu for Miami man with neck cancer
Respiratory health is important to John Saviano, a man who has led a healthy life, who doesn't smoke, and who drinks only moderately. For years, he routinely made annual visits to two physicians. He saw his regular physician for basic check-ups. Because scuba diving is one of the Miami Beach man's hobbies, he also saw an ear, nose, and throat specialist to determine that his nasal and ear passages were open to ensure safe diving and snorkeling. In 2003, however, a persistent sore throat sent him for an extra visit with his regular ENT physician.
The diagnosis was adult tonsillitis, and the initial treatment was antibiotics. When that treatment brought no improvement, his physician performed a tonsillectomy. John found recovery from that surgery painful and slow. After several weeks of pain, and further visits to the ENT surgeon, it was apparent that something was still wrong. As John put it, "My tonsil grew back." Something was in his throat and could easily be felt.
At a follow-up visit, a month or so after the initial surgery, the ENT physician was startled to see a strange growth where the left tonsil had been. He said, "That doesn't look good," and called in his associate. When asked if he'd ever seen anything quite like that, the associate said "No."
John asked them, "So what is it? Cancer?" Both doctors were taken aback, and said they didn't believe so. Nevertheless, the ENT physician scheduled a biopsy. The diagnosis was cancer, which John says is "not the best thing to hear when coming out from under anesthesia."
Further tests indicated that the tonsil tumor had metastasized into the left neck, where another tumor was located. The ENT specialist referred John to a local hospital's cancer center. John met with a team of doctors, who outlined a course of treatment. Trying to learn just what he was facing, he asked about his prognosis. He was told that, based on his diagnosis, he had a 60 percent chance of surviving two years. That was when the seriousness of his situation sunk in.
John's personal physician told him that even though it was an excellent hospital, he should get a second — even a third — opinion for anything so serious. A consultation at a local university medical center specializing in cancer resulted in a recommendation for a course of treatment radically different from the first.
John and his wife were perplexed. He faced a serious disease, and two teams of doctors were advising two extremely different treatment regimens. It was difficult to know what to do. While pondering the two opinions, John talked with his friend and business associate, Richard. Richard, in turn, discussed John's dilemma with his father, whose law practice involves an extensive network in the medical community. Richard's father made some phone calls.
At the end of that hectic week, John received a phone call from a surgeon at the Mayo Clinic in Rochester. The surgeon began the call with, "I understand you have a problem. Tell me about it." John described his cancer and the two differing treatment regimens recommended. At the end of their conversation, John asked, "What do you suggest?" The surgeon responded, "Can you be here Monday?"
John arranged plane tickets, and a few days later he and his wife were in Rochester, Minn. They had consultations with the three physicians assigned to John's case, an ENT head and neck surgeon, a radiation oncologist, and a medical oncologist. John describes his experience at the Mayo Clinic as "so different" from the previous hospitals. The levels of professionalism, efficiency, coordination, integration — even simple politeness — were a world away from John's previous hospital experiences. "Mayo Clinic should be the example that all medical establishments should strive to emulate," he says.
Surgery was a possibility, but with the cancer so close to the base of the tongue and vocal chords, the team said it was almost impossible to predict surgery's effect on speaking and eating. Because of the potential for damage, they decided on an aggressive course of radiation therapy and chemotherapy to shrink the tumor.
With his treatment projected to take at least two months, John and his wife had to determine how to take care of their small business during their time in Rochester. They arranged a two-month lease at a hotel that is connected to Mayo Clinic by a pedestrian tunnel. Then they returned to Florida to pack up the office and communications essentials they would need in Rochester while John was being treated. John discussed the situation with the company he owns, and his co-workers agreed to fill in for him in his absence.
Treatment began just before Thanksgiving 2003. The physicians on his team told him that radiation could be considered in three phases: "the first barely recognizable, then distinct discomfort, and finally absolute misery." For John, though, "The chemotherapy had an instant effect. Food rapidly lost its taste and nausea was immediate. The first week was all about finding which medications would control the nausea." The team introduced John to a speech and swallow pathologist, who would monitor any damage that might occur due to radiation.
John had never had much medical treatment, so the severity of the radiation and chemotherapy was quite a surprise. He says, "Radiation is a rather barbaric form of treatment, but it's about the best there is."
Although he has vivid memories of the difficulties, he says that the care shown by the Mayo staff made a real difference. "At every level — nurses, doctors, administrators, assistants, volunteers — throughout the organization I was treated with professionalism and kindness."
John will never forget being examined about a third of the way through his treatment, when an endoscopic examination showed that the tumor was shrinking significantly. At that point, the radiation oncologist told him that the way things were looking, he would probably be in the 90th percentile. "A great thing to be told, right around Christmas."
Although the news cheered him, the chemo made it impossible for him to taste — and thus enjoy — food. Coupled with the oral pain caused by radiation, eating was becoming increasingly difficult. His diet began to consist primarily of baby cereals, soups, and liquid supplements. For a person who enjoys fine dining, and frequently traveled to enjoy it, that was a real shock.
Weight loss was inevitable. John has always been thin, but now he became almost skeletal. The team kept an eye on that. "If my weight dropped by more than 20 percent, they would have to consider the dreaded stomach tube. Fortunately, I was able to avoid that much weight loss, but not by much."
At the end of the two-month treatment regimen, everything looked good — in his throat, at least. "My looks were something else. In addition to the looking almost skeletal, the radiation had burned off the hair below my ears. I had sort of a 'Moe Stooge' look. Vanity had to go out the window."
After six weeks of recovery at home in Florida, John and his wife returned to Rochester for surgery. The team needed several throat biopsies to determine whether any microscopic cancer remained, and they wished to analyze the remaining metastatic tumor mass in a lymph node in the neck and remove all soft tissues where cancer could be hiding. But there was no detectable cancer in the throat, and the secondary tumor in the neck was completely necrotic (dead). After four difficult days, he was released from the hospital. Soon after that he and his wife were on a plane back to Miami.
During the next few weeks he focused on getting enough nutrition to begin restoring his weight, a task complicated by the radiation damage to his salivary glands. Other programs helped him deal with the aftereffects of radiation therapy. John entered a 40-day hyperbaric oxygen treatment program and spent two hours a day in a pressure chamber. At the same time, he received physical therapy to heal and recondition his weakened body. He also enrolled in a program of Tai Chi/Qigong. "All that seemed to hasten the healing process," he says.
For the first two years after completing his treatment, John had follow-up visits every three months. Now he goes twice a year. Four years after the diagnosis, he remains cancer-free.
"After about a year, I started to feel a bit like my old self," he says. "By the end of the second year I felt somewhat back to normal. Reaching that two-year point felt like a big accomplishment. My next goal is five years cancer-free."
John is convinced the key to success was the team at Mayo Clinic. He doesn't like to think what might have happened had he not received that phone call that day.