Cancer survivor loses sense of taste to treatment, but says life is sweeter
It wasn’t until he could no longer open his mouth to take a bite of a cheeseburger that Barry Warner knew something was seriously wrong.
The Winchester, Ky., resident had been experiencing some mildly annoying symptoms: a little discomfort while eating and a reduced appetite. He pushed on, assuming the issue would clear up on its own.
But once the pain escalated – leading to the jaw mobility issue – Warner sought the opinion of a friend with expertise in the area: the oral surgeon who had removed his wisdom teeth some 20 years before.
The diagnosis ended up being much more serious than Warner ever expected. Seeing a mass in Warner’s throat, the surgeon took a biopsy and confirmed the bad news: Warner had advanced throat cancer.
“When somebody tells you that you have cancer, your world stops then and there,” Warner said. “But one of my first thoughts was, ‘Thank goodness it was me and not one of my daughters.’”
Searching for answers
The news was especially shocking considering Warner didn’t fit the profile for someone at risk for a head and neck cancer. Roughly 75 percent of these cancers are caused by smoking or excessive alcohol use, but Warner used neither. Nor did he test positive for the human papillomavirus, or HPV, a risk factor that has been increasing the incidence of these cancers, particularly in non-smokers, in recent years. It was, as some might say, just simple bad luck.
Warner began collecting information on his treatment options. He first sought help at the UK Markey Cancer Center, where he met with medical oncologist Susanne Arnold, MD. Although he says he got “good vibes” from their consultation, Warner was thorough in his research, opting to get a second opinion at another facility before making a decision.
Because of the location of his cancer, Warner was told only two medical centers in the country would even attempt to surgically remove it, and it would be a radical procedure with no guarantee of a good outcome.
After his second opinion, he knew he would go with a combination of chemotherapy and radiation. He wanted to stay closer to home so he would have the support of friends and family to help him through the ordeal. He ultimately chose Markey based on his initial meeting with Arnold.
“The second facility told me I had a 40 percent chance of survival – maybe 50 percent just because I was otherwise healthy,” he said. “But Dr. Arnold – she said she thought she could help me. And I believed her.”
Warner began treatment at Markey, undergoing 35 radiation sessions and three chemotherapy infusions over the next two months. Although his cancer was advanced, it had not metastasized very far and was still in a “curable” stage, Arnold said. Because of this, Warner’s treatment plan was bold in an attempt to eliminate the cancer entirely.
“The combination of chemotherapy and radiation is some of the toughest treatment to undergo,” Arnold said. “But he was very strong and did exactly what we asked of him.”
Markey radiation oncologist Mahesh Kudrimoti, MD, who led the radiation treatments, echoes the importance of Warner’s willingness to follow his plan to a T.
“He diligently followed all the instructions,” Kudrimoti said. “He had a very positive attitude, was eager to learn about his treatments and was a fighter.”
A remarkable response
Now age 59 and seven years out from his treatment, Warner is a survivor with a few figurative battle scars. The biggest downsides to treating head and neck cancers are the nearly unavoidable side effects the chemo and radiation cause – namely, significant alterations to taste, smell and hearing. Warner’s sense of smell is intact, but he has some hearing loss and is no longer able to taste foods except those that are extremely spicy, sweet or salty.
But Warner says it’s a trade-off he happily accepted when faced with the alternative of, say, not being around to walk either of his daughters down the aisle.
“The side effects I deal with are collateral damage,” he said. “I’m all right with that. It’s just part of it. In the grand scheme of things, it’s pretty insignificant.”
“He has an amazing philosophy of life,” Arnold said. “His experience is pretty common, with chronic side effects that affect your everyday life, but his response to those limitations is remarkable.”
Sharing his story
Although he may have lost his sense of taste, life is sweeter for Warner, who says that getting sick was one of the most humbling experiences of his life. He calls his experience with cancer his “second chance” to do things right, forcing him to step back and re-evaluate his priorities.
One of the ways Warner is doing that is by sharing his story with others – whether it’s speaking with patients about how he dealt with cancer, serving on Markey’s Patient Advisory Group to help improve care at UK, or lending his opinion on the best food and drink for patients with side effects similar to his.
“Getting diagnosed with cancer was probably one of the best things that happened to me, and I am not the same person I was before,” he said. “So I made myself a promise that if I survived, I would do my best to give back and help make a difference.”Tell us your story More patient stories