IU Health West Hospital

“I went in for a tonsillectomy and came out with a stage 3 tonsil cancer diagnosis”

Patient Stories

April 25, 2019

At the age of 57, Dr. Phyllis Gilworth, a former school administrator, sought treatment for a pesky sore throat and was surprised by the diagnosis.

It was a stressful time in her life. Within 10 months she experienced the death of a parent, sold a house in Michigan City, built a new home in Plainfield, and began phasing out of her 35-year-career in education.

So when she developed a wicked sore throat in May 2107, Phyllis Gilworth chalked it up to a lifestyle on the fast track to many changes.

“It was like strep throat but was sore only on one side. I was bone tired, but not running a temperature . . . I am not well known to frequent doctors or miss work, but I did stay home and go to the clinic to get checked out,” said Gilworth. The initial diagnosis was a contagious virus common among young children – Hand-foot-and-mouth disease.

Three months later she had settled in Plainfield and was preparing for retirement as the Assistant Superintendent for Curriculum and Instruction at the School Town of Munster when the sore throat returned. She made another visit to a clinic and was again diagnosed with Hand-foot-and-mouth disease. Blood work showed no abnormalities; a strep test was negative; she had no fever and her white blood cells weren’t elevated.

A second round of blood work tested positive for Epstein-Barr virus (mono). More tests followed showing she had an abscessed tonsil. Her physician referred her to IU Health otolaryngologist Dr. Michael Myers and on November 10, 2017 she went in for what she thought would be routine surgery to remove her tonsils.

“At the age of 57 I went in for a tonsillectomy and came out with a Stage 3 cancer diagnosis. I did not see that coming, “said Gilworth.

“There are approximately 50,000 new cases of oral cancer per a year,” said Dr. Myers. “I have seen at least 65 over the past three years. Treatment for tonsil cancer is dependent on the stage at the time of diagnosis. Early stages can be treated with radiation with possible additional adjuvant chemotherapy. Patients may require surgery for more than tumors and tumors that do not respond to treatment with radiation and chemotherapy,” said Dr. Myers

Following surgery Gilworth went in for a PET scan to see if the cancer had spread to other parts of her body. “I was concerned about it moving to my brain, but Dr. Myers told me it would go to the lung, so the PET scan was critical to finding out what our next steps needed to be,” said Gilworth. The news was good. The cancer had not spread and was only present in one lymph node.

Based on those results it was decided that Gilworth would undergo seven weeks of radiation Monday through Friday. It was also determined that her cancer was HPV-related and was known to respond well to radiation. “Unfortunately, I was highly sensitive to the radiation and even though we took all precautions to prevent complications, my mouth really was damaged, and I did end up in the hospital with aspiration pneumonia due to swallowing difficulties,” said Gilworth, who was treated at IU Hospital West.

According to the National Cancer Institute, tonsil cancer accounts for about 3.5 percent of all oral cancers. Tobacco use is a leading cause of tonsil cancer. Human papilloma virus (HPV) is another cause of tonsil cancer. According to the US Center for Disease Control and Prevention about 9,000 people a year are diagnosed with HPV-related cancer of the mouth and throat.

Through April 26th, practitioners with IU Health West Cancer Center, along with community dental health partners will offer free oral, head and neck cancer screenings. The screenings are highly recommended for adults with a history of tobacco use.

“I would encourage people to take advantage of any free screenings they can get and be sensitive to lumps, bumps sores or pain in the mouth throat or neck and be pro-active,” said Gilworth.

On February 5 she celebrated one year of completing radiation.

“During the first year I was seeing Dr. Myers and my oncologist Dr. Morgan Tharp monthly. We do routine scans, CT and PET, to make sure that there is nothing lurking, and we have now started to space out my appointments to every couple of months. I will be followed closely for five years and have been told by both Dr. Myers and Dr. Tharp that if I find a bump, or a lump, or I just don’t feel good to call immediately and they will get me right in. Do not wait,” said Gilworth.

“I learned a lot about myself. Things can change in a heartbeat,” said Gilworth. In the past year, she has traveled to Mexico, Spain and California making new memories. She started back pursuing accreditation work – a role that recently took her to South America.

“I am looking forward to even more opportunities to travel internationally. I am enjoying my kids and grandkids with abandon. I pray more and whine less. I bought myself a cherry red 2018 Camaro convertible and drive with the top down even when it’s cold, and never use the cruise control. I am blessed to have been given a second chance, I don’t intend to squander it.”

-- By T.J. Banes, Journalist, IU Health.
Reach Banes via email tfender1@iuhealth.org.

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