In March 2018, Margy Brown went to the dentist for a routine checkup. With no symptoms or pain, she had no idea that two months later, she would endure a 10-hour surgery to remove a tumor caused by the human papillomavirus.
Brown, 73, had almost two-thirds of her tongue removed and reconstructed during the surgery and now, after a year of recovery, is hoping to spread awareness of HPV-related cancers, particularly throat cancer, which is seeing a sharp increase in cases in the U.S.
HPV is the most common sexually transmitted infection and more than 100 strains of the virus exist. According to the Centers for Disease Control, 80% of sexually active people will contract HPV at some point in their lives. While the virus is common and will usually go away on its own, some cases can develop into cancer over time.
“I felt embarrassment and shame,” Brown said about having HPV. “Later, I felt panicked.”
This, however, was not Brown’s first experience with cancer. She was also diagnosed with cancer 15 years ago, a stage 4 throat cancer that would leave her with a feeding tube through the abdomen for the rest of her life. She would find out later that her initial cancer was also caused by HPV.
Dentist finds lump
After Brown’s dentist, David Spaulding, and an oral hygienist noticed a lump on the back of her tongue in 2018, she went to Banner-University Medical Center Tucson where she met head and neck cancer surgeons Dr. Steven Wang and Dr. Shethal Bearelly.
“She had developed a new cancer in the back of her tongue, kind of a hidden area which you don’t really see readily, so they can often develop without people realizing. These are often difficult to identify,” said Wang, who also serves as the chair of the Department of Otolaryngology/Head and Neck Surgery at the University of Arizona College of Medicine.
On May 3, 2018, Brown went into surgery with Wang and Bearelly. Together, they removed the tumor and completed the reconstruction of her tongue.
“For Margy, the goal of the surgery was to remove the cancer and to cure her of cancer, but then also to help rehabilitate her and that usually involves reconstructing that area that we’re removing with another piece of skin or muscle,” said Bearelly. “In her case, we used her forearm tissue, which is essentially a transplant of one’s own skin and muscle, and we used that tissue to rebuild the back portion of her tongue.”
While cancer on its own can cause a great amount of dysfunction, the process of removing a tumor, especially from the throat, can also be very dangerous. For Brown’s doctors, maintaining her quality of life was the most important thing.
“Whenever we think about reconstruction, especially for head and neck, the things that we care about and think about are trying to restore function to that area. These are the things we take for granted every day, but being able to breath, being able to speak, being able to swallow, are all things that are really important for all of us,” said Bearelly.
During the surgery, the doctors also made use of a technology called the Da Vinci Robot. Because her tumor was located at the back of her throat and was difficult to access, Wang and Bearelly used the robot to help remove the cancer. According to Wang, 10 years ago this surgery would have required surgeons to break a patient’s jaw.
“I am who I am today due to my challenges,” Brown said. “God has been my lifeguard and has gifted me with my life savers, Drs. Wang, Bearelly and Spaulding. I am grateful to still have my marbles.”
Struggling after surgery
Following her successful surgery, Brown began a long rehabilitation journey. In August 2018, she began seeing Nancy Turman, a speech language pathologist at Carondelet St. Joseph’s Hospital.
“She had pretty limited movement of her upper tongue. She was dealing with the repercussions of not being able to communicate effectively, and it was a struggle,” said Turman. “But we worked to give her the tools to work through the process of regaining some of her communication ability.”
Brown said she turned her sadness of not being able to communicate into energy to continue working harder.
“Nancy gave me a lot of moral support, which I needed,” she said.
While the road to recovery is not over yet, Brown said she feels very grateful to be here today. In addition to speech therapy, Brown sees Dr. Wang every three months.
“Going to the doctor is one of my hobbies,” Brown joked. “It’s part of my social life.”
Brown’s physicians are hopeful that Brown will continue to rehabilitate, and while they can’t declare her cancer-free for at least five years after the surgery, they say her tenacious spirit will help her get through.
“What I find truly inspiring about Margy is she is one of those pretty rare individuals who has survived head, neck or throat cancers twice,” said Wang. “She is doing remarkably considering she’s faced not just one, but two cancers.”
HPV-related throat cancers on the rise
Brown is just one of the many people who are affected by HPV-related cancers. The CDC estimates that over 33,000 patients develop an HPV-related cancer each year in the U.S.
“People are probably more familiar with HPV as a cause of cervical cancer, but it is actually the leading cause of the type of throat cancer that Brown had, and that’s not appreciated very much by the public or even by the medical community,” Wang said.
According to Wang, 90% of throat cancers are caused by HPV. Unlike cervical cancer, there is not yet a screening process for throat cancer, so unless someone is experiencing visible symptoms, it’s likely to go undetected.
“I think one of the most important things to keep in mind about HPV associated cancers is that it affects the type of people who aren’t usually associated with developing throat cancers. Many times, we associate throat cancers with smoking and that’s not the case with HPV,” said Wang. “The awareness is important because if someone presents with, for instance, a sore throat that doesn’t go away or even more commonly a lump in the neck, and they’re not thinking that it might be cancer, then there’s this delay in diagnosis.”
While there is a vaccine for HPV that is recommended for young girls and boys, the HPV virus can live undetected in a person’s body for many years, according to Wang. So, people with HPV who never had access to the vaccine are still at risk of developing the cancers associated with the virus.
“This is a major health issue, said Wang. “We’re going to see, over the next couple of decades, a really epidemic level of HPV related throat cancers. Because for the individuals who are getting those HPV-related cancers now, they likely were exposed to the virus many, many decades ago. So, a vaccine is not going to help in these cases.”
Even with HPV-related throat cancers on the rise, Wang said that the prognosis and response to treatment is much better than other oral cancers. With appropriate treatment, about 90% of these patients are cured of the cancer.
Dr. Wang and Bearelly also participate is several seminars each year where they provide education and training for local dentists on head and neck cancers as well as free screenings for the public.