Young Oral Cancer Survivor Shares Her Story

When Stephanie’s boyfriend proposed to her in France, she expected to start planning a wedding when they returned home to Durham, North Carolina. Instead, she ended up having surgery for oral cancer.

Seven years later, Stephanie, a former children’s librarian, is ready to share her own story with others to help increase awareness about oral cancers, which along with oropharyngeal cancers affect nearly 53,000 Americans each year. Oral cancer is cancer of the oral cavity, which is made up of the mouth and tongue, while oropharyngeal cancer is cancer of the middle of the throat, including the tonsils and the back, or base, of the tongue, just above the larynx (the voice box).

The Saga Begins

In 2010, Stephanie was 27 and had recently moved to North Carolina from Michigan to pursue a graduate degree in library sciences. One day, she was singing along with the radio on her way to a dental appointment when she happened to look in the rearview mirror. That’s when she noticed a white spot on her tongue. She asked her dentist about it.

“She said she had no idea what it was, but said if it doesn’t go away in a week to go see a doctor,” Stephanie says.

When it had not disappeared, her dentist referred Stephanie to an oral surgeon, who she began to see every six months for monitoring.

“He would biopsy it, and it would never come back as cancer, but it was always this funky dysplasia, similar to when you get an abnormal Pap smear and they decide to watch it,” Stephanie says.

Then, after three years of regular checkups and no cancer, her luck changed.

“My then-boyfriend and I had gone to France, where he proposed. And the day after I came back the oral surgeon called me and told me I had cancer,” Stephanie says. “It was the worst thing ever.”

A Turbulent Chapter

Instead of wedding dress shopping and cake tastings, Stephanie immediately had surgery.

“Unlike other areas that we treat, the oral cavity is the one area where surgery is still the only first-line therapy,” says UNC Health head and neck cancer specialist Trevor G. Hackman, MD.

In other words, for oral cancers, surgeons first need to cut out the cancer from the mouth or tongue before the patient undergoes any other type of therapy, such as radiation or chemotherapy. This strategy is the most effective way to treat the cancer and reduces the chance of complications or side effects, Dr. Hackman says.

Stephanie had seven weeks of radiation following her surgery.

“While this experience was one of the worst times ever, it also was a positive experience because we had so much support from the doctors and nurses,” she says.

About Oral Cancer

A white or red bump or sore inside your mouth or on your lips can be a sign of oral cancer, but most of the time it is something benign. The most important thing to look for is any type of abnormality that does not go away on its own in a few weeks, the way a canker sore or a blister would.

Oral cancer typically affects adults older than age 45; however, the rate of oral cancers is on the rise in women under 40. The reason for this increase is unknown, Dr. Hackman says.

“We don’t have a prime reason as to why there is an increased incidence of younger female patients, and that’s what we’re trying to figure out,” Dr. Hackman says.

Tobacco use, excessive alcohol consumption and poor oral hygiene are risk factors for oral cancer, but Stephanie says she never smoked and has always maintained a healthy lifestyle.

Dr. Hackman says going to the dentist regularly can help reduce your risk of getting advanced oral cancer. “Go to the dentist on a routine basis so he or she can refer the patient to a specialist and thereby allow the cancer to be treated early before it can invade deeply or spread,” Dr. Hackman says.

That’s exactly what helped Stephanie.

Telling Her Story

While it may have been delayed because of her cancer diagnosis and treatment, Stephanie got her fairy-tale wedding in 2014, six months after her treatment ended. Now 36, she enjoys spending time with her husband, Mike, her two young children and 11-year-old stepdaughter, as well as serving on a patient advisory council at UNC Health. In this role, she can help other oral cancer patients as they undergo treatment.

“Not a lot of people have gone through this specific thing, so I try to help them know what to expect,” Stephanie says.

Dr. Hackman says this type of support can be very helpful to oral cancer patients, as depression rates are higher in head and neck cancer patient populations than other types of cancer populations because of the cancer’s impact on quality of life after treatment.

“You can’t hide head and neck cancer,” Dr. Hackman says. “It affects your ability to talk, to swallow, your physical appearance and your social interactions. These are psychological and social changes that you can’t hide after treatment for these cancers.”

Dr. Hackman says it’s important for head and neck cancer patients to have a very strong support system.

Stephanie agrees. “We’re all a community, and we need each other.”

If you have questions about oral cancer, talk to your primary care provider or find an ENT doctor near you.