Oral Cancer Patient Resource - ASCP Patient Champions

ORAL CANCER

Oral cancer is a malignant tumor that starts in the oral cavity. This cancer can develop on the surface of the tongue, the lips, the gums, the roof of the mouth, the tonsils or inside the cheeks. The symptoms of oral cancer include; white or red patches on the tongue or inside the cheeks, a persistent sore on the lip or tongue, lump on the lip, trouble chewing or swallowing and swelling or pain in the jaw. Squamous cell carcinoma is the most common type of oral cancer making up more than 90% of the cases. Some of the risk factors for oral cancers include alcohol use, tobacco use and human papillomavirus (HPV) infection, which represent the vast majority of cases.

RESOURCES

Educational Materials: Oral Cancer

Español: Cáncer Oral

*Image from DoveMed.com
Squamous cell carcinoma in the mouth arises from normal mouth lining cells that have undergone damage from various sources and transform into cancerous cells. In the image, the cells retain some likeness to regular mouth lining cells (which are typically a single flat layer) but have disorganized growth patterns, very abnormal cells, and grow into and through normal tissue.

EVA’S STORY

“I didn’t know you could get cancer in the mouth. After all, what could they possibly be looking for on the tongue?”

Eva had a little sore on her tongue, but no other symptoms. The tissue color and texture were changing, but Eva didn’t feel anything else, so she did not pay much attention to it.

After getting a biopsy, she was initially diagnosed with hyperkeratosis, ‘a callous on the tongue,’ as she was told. However, two years later, the sore had returned right over the site of the first biopsy. For the next several months, she was treated for oral trauma. But the gels, rinses, shaving down the sharp points of her molars, and wearing a night guard, didn’t heal the lesion. The sore also became more and more painful.

Eventually, Eva went to New York City for a second opinion. The surgeon looked at her tongue and examined the lymph nodes in her neck. Another biopsy resulted in a Stage IV squamous cell carcinoma diagnosis, an advanced cancer that spread beyond the initial organ, in this case the tongue.

Eva’s treatment involved surgery and radiation. A third of her tongue was reconstructed with tissue and fascia from her forearm and thigh. Forty lymph nodes on the left side of her neck were removed. “I thought the surgery was the worst thing that could happen to me until I endured the side effects of a maximum dose of radiation.”

The head & neck pathologist who made her cancer diagnosis requested the slides of the first biopsy and stated she should have been flagged two years ago. “If I had been educated about oral cancer by my dental professionals about the signs and symptoms, I would have been more proactive and could have advocated to have my first biopsy read by a specialized pathologist, possibly catching my cancer earlier”.

It has been years since Eva’s cancer diagnosis and she has had no recurrence. Over time, additional changes to the tissue on her tongue has required her to have more biopsies - a total of 6 now. She always requests an oral pathologist to review these.

“The expertise of a specialized pathologist could have provided an earlier diagnosis, sparing me from metastatic spread and the subsequent and extensive treatment. I share my story to help educate and advocate for others.”