As a healthy 29-year-old woman, Kat wasn’t the stereotypical tongue cancer patient.
And so, when her dentist discovered an early symptom of the disease—a white spot on the side of the tongue—during a routine teeth cleaning in the spring of 2019, she wasn’t alarmed. Kat’s dentist thought she had probably just bit her tongue but referred her to an oral surgeon to be safe. Unconcerned, Kat decided not to follow up with the surgeon.
Six months later, Kat felt more tired than usual. She attributed the fatigue to an increased workload at her job in college residential life. When the side of her tongue began to ache, she delayed getting it checked out. “I figured I’d go back to my dentist once things got calmer at work,” said Kat. “But my tongue started to get increasingly painful.”
An Unexpected Diagnosis: Oral Squamous Cell Carcinoma
It was a Friday night in August when Kat noticed a gash on the side of her tongue. On Monday morning, she visited her dentist and then an oral surgeon, who prescribed medication for her inflamed tongue. The surgeon scheduled a biopsy for that Friday.
“The doctors still hesitated to say the gash was more serious than biting my tongue,” said Kat. “I’m young and don’t smoke. I don’t fit the profile of a tongue cancer patient.”
A week after her biopsy, Kat had convinced herself that the gash wasn’t serious. Unfortunately, the biopsy results proved otherwise. The surgeon told her that she had oral squamous cell carcinoma, a cancer that affects about 34,000 people in the U.S. each year.
Searching for the Best Cancer Care
That weekend, Kat and her mom researched hospitals in the Boston area. They scheduled multiple consultations with doctors. Kat’s primary care provider recommended Dana- Farber/Brigham and Women’s Cancer Center (DF/BWCC).
At DF/BWCC, Kat met with three cancer specialists who would later become her care team: surgical oncologist Donald Annino, MD, DMD, radiation oncologist Roy Tishler, MD, PhD and medical oncologist Jochen Lorch, MD, MS.
Kat appreciated that her doctors took the time to meet with her and her mom and answer their many questions. She also learned about DF/BWCC’s unique resources for patients. The Young Adult Program (YAP) in particular appealed to her. The program provides educational, emotional and social support opportunities to young cancer patients.
“When my doctors scheduled my MRI and PET-CT scan for the next day, I walked out of that initial appointment knowing that I wanted to be treated at DF/BWCC,” said Kat.
Treating Tongue Cancer with Immunotherapy and Surgery
Kat and her team of doctors considered the best treatment approach for her cancer. The treatment options included: surgery, radiation therapy, chemotherapy and immunotherapy. She would need at least surgery and radiation therapy, according to her care team.
In September, Kat enrolled in a clinical trial where she received immunotherapy, a treatment that uses a person’s own immune system to fight cancer. This clinical trial allowed Kat to receive a newer treatment early on in hopes of reducing the extent of future treatments.
In early November, Kat underwent surgery at Brigham and Women’s Hospital. During the 9-hour surgery, Dr. Annino removed a large tumor from the side of Kat’s tongue. He then biopsied the lymph nodes in her neck for cancer cells. When he finished, he reconstructed her neck using blood vessels from her forearm.
“Before my cancer journey, I’d never even had an IV,” said Kat. “For my first surgery to be a 9-hour operation, where they cut out part of my tongue… that was very intimidating. It helped that my cancer team was so kind and patient.”
Kat spent the next 10 days in the Brigham’s ICU while her tongue, neck and forearm healed. A couple of weeks after she left the ICU, she met with Dr. Annino at DF/BWCC and learned that her lymph nodes didn’t contain cancer cells. It meant that Kat wouldn’t need chemotherapy, but her doctors still recommended radiation treatment.
Undergoing Radiation Therapy at the Brigham
In December 2019, Kat began her third and final cancer treatment at the Department of Radiation Oncology at the Brigham. It consisted of 30 consecutive days of radiation therapy, which uses high doses of radiation to kill cancer cells.
Halfway through her radiation treatments, Kat developed thrush, an overgrowth of a natural fungus in her mouth that caused painful white lesions. Thrush is one of many common side effects of radiation to the mouth. The pain makes it hard to eat solid food, so Kat began a soft food diet of protein smoothies for more than 2 months.
Kat had weekly check-ins with her radiation oncologist Dr. Tishler, who oversaw the radiation therapy. She frequently corresponded with dietician Hannah Dalpiaz, RN, LDN, CNSC at DF/BWCC, who gave her daily calorie and protein goals to help Kat stay nourished. Kat also met with a therapist at the Brigham, Miryam Yusufov, PhD, who helped her manage the panic attacks that she’d been having since her cancer diagnosis.
Kat finished radiation treatment at the end of January 2020, but the side effects worsened for the next 2 months. In addition to the thrush, she had sore throat, mucositis (painful inflammation of the mucous membranes), itchy skin and severe fatigue. The painful sores made it hard for Kat to eat, but her body needed the calories to heal. When her treatment ended, she experienced nausea and vomiting, which caused her to become dehydrated.
Meanwhile, Kat communicated with nurses through email and phone to discuss her side effects. “Everyone at the Brigham was incredible,” said Kat. “It’s a team effort there.”
COVID-19 Pandemic Disrupts End of Treatment
At the end of February, Kat flew back to Texas to stay with her family who she hadn’t seen over the Christmas holidays. She had met with her team at DF/BWCC to discuss the trip, and they decided together it was safe for her to go. Kat kept her team at DF/BWCC updated through virtual visits every couple of weeks.
Due to the start of the COVID pandemic in March, Kat’s 3-week visit to Texas became a 3-month stay. She missed her 12-week follow-up scans in April because she couldn’t return to Boston. Eventually, Kat got MRI and CT scans in Texas and sent the results to DF/BWCC. In late April, she met with Dr. Tischler through a virtual visit to review the scans. Kat’s mom sat with her beside the computer. Together they learned that Kat was cancer-free.
Raising Awareness Online about Tongue Cancer
A year after her diagnosis, Kat has become an advocate for tongue cancer awareness in young people. She posts frequently about her tongue cancer journey online because social media was the first place that she found other people her age who had tongue cancer, too.
“Before I was diagnosed, I’d never even heard of tongue cancer,” said Kat. “Once I started to research it online, I couldn’t find any scholarly information about someone in my situation. I post online because I want younger people to know that they’re not alone.”
A young woman recently contacted Kat about her own diagnosis and described her struggle trying to choose a treatment center. Kat recommended that she call DF/BWCC. To Kat’s delight, the woman had already scheduled a consultation with the cancer center and stuck with them after she met her care team.
“I’m extremely happy with the care I received at the DF/BWCC,” said Kat. “I can’t imagine having been treated anywhere else. A cancer center is not a home that you want to have, but it’s become a home for me.”
Why You Shouldn’t Ignore Cancer Symptoms
Young and otherwise healthy, Kat never expected to be diagnosed with cancer—especially a cancer she had never heard of before. That’s why it’s important to pay attention to your body and monitor any unusual pains or lumps. If you have a pain or lump that isn’t going away, reach out to a health care provider.
“If we discover cancer early, there are typically more treatment options that are less involved,” said Dr. Tishler, Kat’s radiation oncologist at DF/BWCC. “For example, if a tongue cancer patient is diagnosed early, they may only need modest surgery. But if a cancer has progressed, as was the case with Kat, it might involve a bigger surgery and possibly other treatments such as radiation therapy and chemotherapy.”
It can be hard to identify some cancer symptoms on your own, which is why annual screenings are so important for diagnosing cancer. Still, most cancer screenings don’t start until you’re in your forties or later.
“It’s really important to stay on top of your general health,” said Dr. Tishler. “Even if you’re young and healthy, you should visit your healthcare providers regularly. They may be able to identify early-stage cancer even if you’re not having any symptoms.”
Cancer Doesn’t Stop for COVID-19
Because cancer is more treatable in its early stages, treatment shouldn’t be delayed. In the time of COVID-19, cancer patients may be anxious about visiting the hospital for care. The Brigham has put a wide range of safety protocols in place to ensure the safest possible environment for cancer patients. To allow cancer treatments to continue safely without delay, the Brigham performs rigorous cleaning and does hospital-wide screenings, among taking many other measures.
“Nervous patients might try to rationalize putting off cancer care, but it’s critical not to delay your care, because your cancer could progress,” said Dr. Tishler. “The Brigham is set up to see patients safely, whether you’ve already been diagnosed or are in need of an evaluation of a concerning pain or lump.”