When Karren Tyler noticed a spot on the back of her tongue last year, she had it checked out by a doctor near her home in Charlottesville, Virginia, who told her it was probably nothing to worry about. But a week after having the spot removed and biopsied, Karren learned she had tongue cancer and might need further surgery to remove part or all of the tongue — a procedure known as a “glossectomy.”
“When you hear the word ‘cancer,’ you’re glazed over, your head spins,” Karren recalls. “You’re watching people, but you’re not really absorbing anything.”
After researching the best places for tongue cancer care, she decided to travel to Memorial Sloan Kettering Cancer Center (MSK) to get a second opinion. MSK’s head and neck cancer specialists are world-renowned for their expertise in diagnosing and treating tongue cancer while reducing side effects, which can include changes to a person’s appearance and difficulty speaking, eating, and breathing.
About 20,000 people are diagnosed with tongue cancer every year, representing about 1 percent of all cancer cases in the United States, according to the National Cancer Institute.
“Especially with uncommon diseases like tongue cancer that require specialized expertise, getting a second opinion can make a big difference,” says Jennifer Cracchiolo, MD, a head and neck cancer surgeon at MSK who is experienced in treating patients with oral cavity cancer using surgical techniques that give patients the best functional and cosmetic outcomes.
Quickly Scheduling an Appointment With a Tongue Cancer Specialist at MSK
Karren says she was surprised by how easy it was to make an appointment at MSK. “It all happened so fast,” she says.
She was on the phone with an MSK care advisor shortly after submitting her request for an appointment through MSK’s website: “While we were talking, they pulled up my medical records on the MyChart patient portal and were able to connect me with the head and neck cancer care team, which I thought that was amazing.”
“We want to make it quick and easy to get an appointment,” Dr. Cracchiolo says, “so patients don’t have to wait around when they’re already dealing with so much.”
Like more than 10,000 patients last year, Karren decided it was worth it to travel to MSK for cancer care far from home.
“Everything about MSK is positively top notch. You’re greeted very pleasantly, you do not wait, you’re taken in, and it all just flows,” Karren says. “Dr. Cracchiolo talks to you as if she has no other patients — she’s working with you and only you. I was overwhelmed by her knowledge, compassion, and confidence.”
Specialized Diagnostics Can Mean Less Aggressive Treatment for Mouth Cancer
When Karren met with Dr. Cracchiolo, she was relieved to learn that she would need only a partial glossectomy, meaning only a small part of her tongue would be removed.
In Karren’s case, says Dr. Cracchiolo, “the tumor’s location allowed us to recommend an approach that would remove the cancer and help preserve function without sacrificing successful treatment.”
MSK head and neck surgeons have experience treating a wide range of head and neck lesions, and they work closely with a dedicated team of MSK pathologists who focus on oral cavity cancer and can analyze cancer cells right down to their molecular structure using next generation genetic testing. Understanding the extent and behavior of a specific cancer is vital to planning the right surgery.
“I have seen people come to us with the wrong diagnosis and treatment recommendation,” says Dr. Cracchiolo. “That’s why our pathology is such a game-changer. After taking a closer look, I might tell people they actually need more or less treatment than they thought. It really depends on the individual case.”
MSK’s Mouth Cancer Surgery Team Uses the Latest Technology
For patients who need more aggressive treatment than Karren required, the MSK head and neck team uses advanced technologies, such as virtual surgical planning for a full tongue resection, jaw removal, and reconstruction. Using high-tech computer simulations before a procedure ensures precision and helps prevent nerve and dental damage, and other complications.
MSK’s team of plastic and reconstructive surgeons use the latest techniques to preserve the mouth’s form and function and to help patients look and feel like themselves again after treatment.
“Because MSK offers so many sophisticated tools and imaging options, we are able to tailor our approach to each patient’s specific needs,” Dr. Cracchiolo says.
Results of Tongue Cancer Surgery at MSK
Within two weeks of meeting with Dr. Cracchiolo for a second opinion, Karren was scheduled for surgery at MSK — much sooner than was possible at her local hospital. The minimally invasive operation to remove what remained of the cancerous spot on her tongue was a success. Not only was her tongue left intact, but Dr. Cracchiolo said radiation therapy wouldn’t be necessary.
“I couldn’t believe it,” says Karren. “When I got the lab reports back, there were no signs of tongue cancer — every margin was clear, and there was no cancer in any of the lymph nodes they removed. I’m so grateful.”
After spending three days in the hospital, Karren was cleared to fly back to Virginia to finish her recovery at home. Her yearlong rehabilitation included several video visits with an MSK speech pathologist who works with patients following head and neck cancer surgery.
“Karren has gone on with her life and is doing great,” says Dr. Cracchiolo, who now sees Karren once a year.
Helping Others Get Support
Thankful for the expert care and successful treatment she received at MSK, Karren wants others to understand the importance of getting a second opinion after a cancer diagnosis.
Karren says she also felt called after her cancer experience to start a faith-based support program called CancerWalk, which connects patients, survivors, and caregivers in an online community that provides encouragement, support, and understanding from those who know.
“You’re never quite the same after you’ve heard the words ‘you have cancer,’ so it’s important to connect with somebody who understands how you feel,” she says.
Semi-retired after nearly 30 years in the mortgage industry, Karren says her work with CancerWalk has given her a deeper sense of purpose as a cancer survivor.
“I think Karren has responded to an important need here, because meeting people who’ve been through similar experiences is incredibly helpful when you’re going through cancer,” says Dr. Cracchiolo. “It’s great to see her organization help patients feel less alone.”
Key Takeaways
- Tongue cancer is uncommon, representing about 1 percent of all cancer cases in the United States.
- MSK’s head and neck cancer specialists are world-renowned for their skill in diagnosing and treating tongue cancer, with special expertise in using minimally invasive surgical techniques that preserve quality of life.
- MSK head and neck surgeons work closely with a dedicated team of MSK pathologists to determine the extent and behavior of cancer cells when planning surgery.
- Some 10,000 cancer patients travel far from home each year to be treated at MSK.