Oral cancer patient, 25, now urges others: Demand answers to symptoms

December 14, 2014 | by Denise Heady

When 25-year-old Angelina Mattos was diagnosed with Stage 4 oral cancer earlier this year, she learned that her only hope of survival was through the removal of her tongue, a surgery that leaves people without the ability to talk or eat normally, sometimes permanently ending their ability to speak.

Tounge cancer patient Angie Mattos Tongue cancer incidence rates are increasing in women ages 18 to 44. Angelina Mattos, right, was initially misdiagnosed; now she urges people with symptoms to be their own advocates. She's shown here with Ellie Maghami, chief of head and neck surgery at City of Hope, who warns that oral cancers are best diagnosed early.

After hearing the prognosis, her family wanted to record Mattos so they could still listen to her voice when she could no longer talk. They suggested she record herself reading children’s books in case she ultimately decided to have children.

But Mattos wouldn’t let them. She refused to let her family, or herself, believe she would never again speak. She decided that she would beat the odds, that she would indeed regain her ability to talk. (Watch her recent interview with CBS.)

That decision was a defining moment in the Pomona woman's long, and unexpected, battle with oral cancer.

Symptoms that went unheeded

Mattos first noticed something wasn’t right with her tongue months before she was diagnosed with oral cancer. A painful sore had developed in her mouth, but numerous trips to doctors failed to yield an accurate diagnosis. Some thought she'd bitten her tongue; others thought she had a  temporary ulcer.

Finally, when the sore spot started bleeding in the middle of the night, she went to the emergency room. There, she received a diagnosis: cancer. Specifically, she was diagnosed with Stage 4 squamous cell carcinoma, a type of oral cancer usually found in older adults who drink and smoke heavily.

“I didn’t think that this could ever happen to me,” Mattos told KNX Radio. “You just never know.”

Mattos was referred to City of Hope and surgeon Ellie Maghami,M.D., chief of head and neck surgery. Maghami said that, if caught early, Mattos' type of cancer is highly treatable and curable. But, she added, it can often be overlooked.

“A lot of times we miss the opportunity for diagnosis because we tend to think everyone with mouth cancer is a heavy smoker and heavy drinker, but that’s not necessarily the case,” Maghami told KNX.

Smoking and drinking, particularly when combined, are considered the most significant contributing factors to oral cancer, according to the federal Centers for Disease Control and Prevention. In fact, approximately 75 percent of oral cancers are attributed to the use of smoked and smokeless tobacco.

Mattos didn’t display any of the typical risk factors for this type of cancer. She was young and didn’t smoke or chew tobacco. Also, unlike with other types of oral cancer, HPV was not a factor.

“That’s why her case broke my heart in essence,” said Maghami in the CBS interview. “She’s a young lady, and she not only has to live with the consequences of her cancer but the treatments thereof too.”

Although only about 2 percent of tongue cancer cases are diagnosed in patients younger than 35, Maghami said. This type of cancer is increasing in white adults, particularly women, age 18 to 44 who don’t drink or smoke.

Next step: Surgery

In October, Mattos underwent a 15-hour surgery in which Maghami, removed most of her tongue. After the removal of the tumor, Robert Kang, M.D., assistant clinical professor of head and neck surgery at City of Hope, constructed a new tongue for Mattos using skin and fat from her forearm.

One week after the surgery, Mattos started talking. Her voice was rough, but the words were intelligible. Though her voice will never be what it once was, her progress by all accounts has been impressive – and surprising.

Now, Mattos wants to share her story with others, encouraging other people with her symptoms to keep pushing for answers. Both Mattos and Maghami stress the importance of second opinions.

“If you have a sore in your mouth for more than two weeks, and it’s not getting better, and it’s not gone, then that should alarm you that it could be something very serious,” Maghami said. (Read these tips on ways to reduce your risk of oral cancer.)

Everyone is his or her own best advocate, both say. “Push for it. Keep pushing for answers,” Mattos said. “I could have gotten this taken care of a long time ago.”

Mattos is still undergoing treatment for her cancer, but maintains a positive attitude. Despite the drastic changes she's experienced, she maintains her personal motto: “I can. I will.”

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Learn more about treatment of head and  neck cancers at City of Hope.

Learn more about becoming a patient or getting a second opinion at City of Hope by visiting our website or by calling 800-826-HOPE (4673). City of Hope staff will explain what's required for a consult at City of Hope and help you determine, before you come in, whether or not your insurance will pay for the appointment.

 

Categories : Patient Care

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