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Cancer ordeal hits home for Roswell Park’s chief medical officer

You might not recognize Boris Kuvshinoff’s name, but his face probably looks familiar. He’s the soft-spoken surgeon in those “Just One Day With Us” television ads for Roswell Park Cancer Institute.

As a cancer doctor, he knows what it’s like to deliver bad news to patients. He knows that anyone can get cancer at any time.

Still, even with all his experience, Kuvshinoff felt blindsided last May when his doctors diagnosed him with an inoperable late-stage tumor in the nasal cavity above his mouth.

“You are numb at first,” Kuvshinoff recalled about that conversation. “It is a hollow feeling as you absorb the news. You don’t know what to say.”

Just a few weeks earlier, he had been named the cancer center’s chief medical officer. Suddenly, he also became its patient.

“I reacted the same way my patients react. You are sort of mortified,” he said in a recent interview in his Roswell Park office.

Nearly a year later, after a grueling treatment, the 55-year-old Kuvshinoff is back at work. But serious illness changes you. Like so many others in similar circumstances, he must adjust to a new normal.

There is no escape from the uncertainty of not knowing whether or when the tumor will return. The clichés about the fragility of life ring true. He talks about living in the moment – not to satisfy a bucket list of wild ideas, but for making the most of his time with patients, colleagues, family and friends.

Kuvshinoff also wants to apply what he learned to his new job.

Meanwhile, he struggles with the unpleasant side effects of chemotherapy and radiation. Among other things, a water bottle is always within reach for a dry mouth from the damage to his salivary glands.

A few weeks ago, he ate a hot dog, the first classic American food he had tasted since his experience with this frightening illness began. Without saliva to help swallow, it took 45 minutes of slow chewing to avoid choking, but it was a simple pleasure and milestone that he talks about with a big smile.

“My wife and I high-fived,” he said.

Early signs

Around Christmas 2014, Kuvshinoff felt a neck pain behind his left ear. He figured it was a muscle problem that would go away on its own. Maybe it was from the way he bent over the operating table, he thought.

The pain persisted, often severe enough to keep him up at night. He tried muscle relaxants without success. He had a dentist look for jaw problems. Months like that passed.

Last April, Candace Johnson, Roswell Park’s chief executive officer, named Kuvshinoff chief medical officer, one of the most important jobs at the hospital.

“You’re like a conductor,” Johnson said. “You keep the trains running on time. You’re also the person focused on outcomes.”

She described Kuvshinoff, director of Roswell Park’s liver and pancreas tumor center who has been at the institute since 2002, as a workaholic with excellent surgical skills and the respect of his colleagues. He also holds a master’s in business administration, all of which, in her eyes, made him a great candidate.

“People listen to him,” she said.

Kuvshinoff immersed himself in the new duties and kept seeing patients, yet with rising concern that something was wrong. About a month after the promotion, he grabbed a hamburger with his son, Alex, a 22-year-old college student, and noticed it took him an unusually long time to chew. He swirled his tongue and realized he couldn’t move it to the left side of his mouth.

“Oh, my God. Tongue palsy. Something is really not right here,” he thought to himself.

His mind raced. It must be neurological, he figured. Terrible fears surfaced – degenerative conditions like multiple sclerosis or, worse, amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease.

“This really got my attention,” he said.

Kuvshinoff talked to a Roswell Park neurosurgeon, who immediately ordered an MRI that revealed the tumor. A biopsy would be needed to confirm whether it was malignant, but there was little doubt in Kuvshinoff’s mind.

“I knew exactly what it meant. You know too much as a cancer specialist. You know the answers to the questions,” he said.

Telling family

One of the most difficult moments for cancer patients is telling family. They search for the right words. They worry about frightening their children. These details mattered to Kuvshinoff.

He drove home that day, thinking about what to say to his wife, Barbara, whom he met in high school, and to Alex. He would have to break the news later to an older daughter, 25-year-old Christina, a musician and teacher in Alaska.

“I made the decision to tell them at the same time. My son is an adult now, and he can process this, I thought. Best to just get it out,” he said.

Kuvshinoff spoke carefully like a doctor, explaining he was pretty sure he had cancer. He described his symptoms and what needed to happen next – a biopsy to confirm the malignancy and more scans to stage it and see if it was spreading elsewhere in his body. He reassured them that he would do everything possible for treatment.

“It was tough. There were some tears and hugs. Now, we needed to move on with the next steps,” he said.

Doctors’ training prepares them to keep a necessary emotional distance from patients. That can be a challenge for physicians taking care of other physicians.

When the Roswell Park doctors told Kuvshinoff the biopsy confirmed squamous cell cancer, stage 4, he could see the discomfort in their faces. He remembers feeling sorry for them.

“They felt so awful having to tell me,” he said.

Becoming a patient

The tumor had invaded the neck muscles that go up into the skull and attach to the spine, causing spasms in the muscle. The only way doctors might have caught it early is if they stuck a scope up his nose and examined the nasal cavity.

“I would have never thought of that in a million years for neck pain,” Kuvshinoff said.

He had seen his own patients in similar situations struggle to manage their emotions. He was no longer the observer.

Cancers of the nasal cavity and paranasal sinuses are rare, with about 2,000 people in the United States developing them each year, according to the American Cancer Society. The five-year stage 4 survival rate is listed as 35 percent. But his prognosis was better than that, because therapies have improved and the tumor had not metastasized.

He could have easily asked, “Why me?” Kuvshinoff had none of the key risk factors. He didn’t smoke. He wasn’t from any of the Asian countries, such as south China and Vietnam, where the cancer is more common.

“It was a little surprising, but I never looked back and made a big deal about that, because I know that anybody can get any kind of cancer,” he said. “You can be the healthiest person in the world. You can exercise. You can eat right. You can live right. And you can still get cancer.”

Illness scares doctors like anyone else, but Kuvshinoff believes physicians absorb the news in different ways.

“The hardest thing is you know too much. I felt deluged with all this knowledge of what was coming down the pike. It all came to me as though in a tidal wave and was intimidating. Patients are anxious because of what they don’t know. I was anxious because of what I knew.”

He and his wife coped in their own ways, too. Kuvshinoff turned to the scientific literature.

“I am passionate about patient education, more now than ever before, because patients are in a better place to make decisions when they are empowered with knowledge. The thing is, it has to be good knowledge,” he said.

He looked up the results of randomized controlled trials, the gold standard of studies, in PubMed, the online database of scientific journals. He also checked treatment guidelines from the National Comprehensive Cancer Network, an alliance of the major cancer centers in the U.S.

He didn’t noodle around the Internet. There is too much marginal information, including promotions for therapies with little or no evidence to back them up, he said.

His wife sought human connections. She found the discussion boards at the American Cancer Society especially helpful for putting her in touch with other patients and their family members.

“It’s a safe place to ask questions,” Barbara Kuvshinoff said. “There are people who have walked the cancer journey who empathize with you when things aren’t going well and cheer you on when you get good results. Cancer is a singular experience, but you find out that you don’t have to face it alone.”

Treated at Roswell

Kuvshinoff was fine with handing over control of his care to others. He didn’t want to know the finest details – just the higher-level interpretation.

He also decided to get treated at Roswell Park, even though it may have meant a loss of privacy. Doctors in bigger cities see more cases like his, but he was comfortable with the medical expertise here and, after research, determined the treatment would be little different elsewhere.

“I believe this is a great cancer center,” he said. “If my patients come to Roswell, I felt I should do the same.”

There are also practical considerations. Did he really want to spend weeks in a hotel room while undergoing a brutal therapy at another hospital?

“My Roswell family turned out to be an important source of support for me and my wife in addition to our church and friends,” he said. “I don’t know how I would have gotten through this without the support we received, especially with the bumps along the road in the treatment.”

The treatment was rough: Seven weeks worth of radiation – 35 sessions in all – consolidated more aggressively over six weeks, plus chemotherapy infusions at the first and fourth weeks.

If he could handle that, the plan called for three additional cycles of chemo, which would increase his chance of survival by a few percentage points.

Doctors used image-guided radiation therapy, which combines sophisticated computer programs to more precisely conform the radiation to the tumor’s three-dimensional shape. That’s crucial for limiting damage to surrounding tissue in an area of the body with such vital structures as the brain stem, optic nerves and internal carotid arteries.

The regimen took its toll. Indeed, an oncologist seeing Kuvshinoff called him a complication magnet, Barbara said.

By the third week, he needed a feeding tube implanted in his abdomen. It was too painful to swallow. He dropped 23 pounds off a small frame that usually weighs around 155. He lost hair, and his hearing was impaired.

Just before Labor Day, Kuvshinoff received the first of the three extra chemotherapy infusions. That’s when his body told him it was time to stop.

His white blood cell count declined and he was hospitalized with fever. The burning sensation in his throat from the radiation returned. His immune system was suppressed and vulnerable to more infections.

“As bad as I felt, I wanted to go on. You know, finish what you started,” he said.

His care team disagreed, telling him the small improvement in survival wasn’t worth the risk of more complications.

The thumbs up

Kuvshinoff wrestled uneasily with the decision. He didn’t want to give up. If the tumor returned, he would wonder if the extra doses could have made a difference. In the end, he made peace with the doctors’ recommendation.

Every cancer patient knows about “scanxiety.” That’s the knot-in-the-stomach stress as you wait for the X-rays that will show whether the cancer is gone.

“I always knew patients had scanxiety, but I truly appreciate now how stressful it is. There is tremendous anxiety before the exam, anxiety taking the exam and anxiety waiting for the results,” Kuvshinoff said.

A radiation oncologist sat down with him and his wife in October after the first scan since treatment ended. The couple was so wound up they lost it when they got the thumbs up.

“We were both in tears. It was like a catharsis,” he said.

Kuvshinoff considers himself an empathetic person, but he sees that what he learned as a patient will make him an even better doctor.

He said oncologists tend to focus on the numbers: blood counts, weight, cancer stage. But much more is going through a patient’s mind.

“You worry about finances, how are you going to get through this, care for your family. I worried about these non-medical issues with my patients, but I didn’t realize how important they could be,” he said.

His experience made him appreciate the support services that helped him so much with functional abilities. They included a nutritionist, speech and physical therapists, pain management, and home care.

And although the benefits of acupuncture, yoga, meditation and other complementary therapies remain uncertain, Kuvshinoff is interested in having Roswell Park make them part of the cancer center’s offerings.

“It’s part of treating the whole patient,” he said.

Remission does not mean Kuvshinoff’s cancer is cured. Cancer cells can remain undetected and cause a recurrence. He will get scans every three months for two years, the next one in April.

There’s no way to predict what will happen.