Patrice Di Carlo’s ordeal with oral cancer just might be enough to scare anyone who still chews tobacco or smokes and drinks heavily out of denial forever.Di Carlo, 49, a former smoker who lives in Malden and works as a legal secretary at the Boston lawfirm, Ropes and Gray, discovered what she thought was a harmless canker sore on her tongue eight years ago. Her dentist thought it was nothing, too, which is not terribly surprising: Every year, thousands of people get funny little spots in their mouths that appear benign to the naked eye – even the naked eye of a trained dentist, though two new detection tests are beginning to make things easier.
But as month after month ticked by and Di Carlo’s spot did not go away, she decided to see another dentist. He immediately sent her to an oral surgeon who removed a sizable chunk of her tongue – a squamous cell cancer – five days later.
Five and a half years later, Di Carlo developed a new primary tumor, as happens to one of every five people with oral cancer.
So doctors removed more of her tongue, plus her salivary glands and, through an incision from her earlobe to her Adam’s apple, dozens of lymph nodes. Then came radiation therapy, which left her with mouth sores that felt like “being burnt with blisters,” she says. The sores made eating so painful that Di Carlo lost 75 pounds. Last summer: Yet another tumor, more surgery. This summer, same story.
Cancer of the oral cavity – the tongue, mouth, insides of the cheeks and pharynx (back of the throat) – kills more people every year than melanoma, cancer of the cervix, cancer of the uterus or certain subtypes of leukemia, including chronic lymphocytic leukemia, acute myeloid leukemia, chronic myeloid leukemia and others.
It’s a “very serious cancer because the oral cavity is where we eat, breathe and speak,” says Dr. Robert Haddad, an oral cancer specialist at Boston’s Dana-Farber Cancer Institute. Aggressive tumors “can grow within weeks – they can become symptomatic, meaning speech and swallowing are affected. I have patients who can’t swallow at all.”
Yet so few people even know about oral cancer – much less know when to worry about mouth lesions – that the American Dental Association and coalitions of dental schools in a handful of cities, including Boston, San Francisco, Kansas City and others, have all launched campaigns in the last year or so to raise public awareness.
Their message, and mine, is simple: Roughly 29,000 Americans, including 19,000 men, are diagnosed with oral cancer every year, according to American Cancer Society figures. About 7,400 die. The 5-year survival rate is only 54 percent, though it’s improving at major cancer centers.
The implications are clear: Don’t become one of these statistics. Which means ,don’t smoke, don’t chew tobacco and don’t drink heavily. Do see your dentist regularly. If he or she doesn’t routinely feel the lymph nodes in your neck, move your tongue from side to side to look for lesions in your mouth and look at the back of your throat carefully, get a new dentist.
You can also monitor yourself, but early cancers can be hard to see. More advances lesions may appear as sores that bleed easily or do not heal; changes in the color of oral tissue; lumps or rough spots, or areas that are painful or numb anywhere in the mouth or lips. Suspicious lesions can be either red or white.
But, unfortunately, there’s more to it than that. As many as 25 percent of oral cancers seem to be caused by something other than smoking and drinking, and researchers aren’t sure what it is. The chief suspect is HPV-16, the same strain of human papilloma virus that causes cervical cancer.
So far, there is no proof that oral sex with an HPV-infected person causes oral cancer. But that is an obvious theoretical possibility and it might explain another worrisome observation: The growing numbers of young people with oral cancer.
Some published data suggest there is “an increased incidence in young adults, patients between 20 and 39,” says Haddad of Dana-Farber. “Many of these people have never drunk except socially and they are not smokers.”
Indeed, even if people this young “smoked like fiends, they wouldn’t have enough time to make a cancer of the tongue,” agrees Dr. Barbara Conley, a head and neck cancer specialist and chief of the diagnostics research branch in the cancer diagnosis program at the National Cancer Institute.
Whatever the cause, the death rate from oral cancer has budged little in 40 years because many people “are being detected too late,” says Dr. Thomas Kilgore, professor of oral and maxillofacial surgery at the Boston University School of Dental Medicine.
When oral cancer is detected early, “it has an 80 percent cure rate,” Dr. Michael C. Alfano, dean of the New York University College of Dentistry, explains in an email interview. “Late diagnosis has a survival rate of only 20 percent.”
“When a lesion is small,” Alfano adds, “it often looks like any benign minor irritation of the soft tissues of the mouth. Dentists are reluctant to biopsy these lesions since a conventional biopsy is invasive and requires both anesthesia and sutures, and because the lesions are usually benign.”
Recently, two new tests (and a third on the way) are beginning to help dentists sort out which patients need to have a surgical biopsy and which do not.
One test, a “brush biopsy” kit called OralCDx, appears to have helped identify more than 2,500 precancerous or cancerous lesions since it went on the market in January, 2000.
In the brush biopsy, a dentist twirls a little stick with small brushes on top of the lesion to get a sample of cells. The cells are then sent to a lab where a computer scans them, picks out atypical cells and projects them onto a TV screen for a pathologist to read. If the pathologist confirms that the cells are abnormal, he or she tells the dentist, who orders a surgical biopsy. (A surgical biopsy is also needed if the cells are judged normal but the lesion persists for several weeks anyway.)
In a study published in October, 1999 in the Journal of the American Dental Association, the brush biopsy test was tried on 945 patients. It detected all the lesions that were subsequently identified as cancerous or precancerous by surgical biopsy; it also had few false positives – lesions incorrectly deemed to be dangerous.
“This test is not a substitute for traditional surgical biopsy. It allows dentists to test harmless looking lesions that might not have been tested otherwise, and if the test comes back abnormal, to send that patient traditional biopsy,” says Dr. Drore Eisen, medical director of the company that analyzes the brush biopsy specimens, CDx Laboratories in Suffern, N.Y.
In another study of the brush biopsy kit published in March, 2002 in the same journal, nearly 1,000 dentists and dental hygienists were screened by the naked eye; nearly 10 percent, 93 people, had lesions, which were then tested with brush biopsy. Three precancers were found. Without the brush biopsy test, all 93 might have been referred for traditional biopsy.
Another test called Vizilite, also approved by the US Food and Drug Administration, is a chemiluminscent light that is shined in the mouth. A dentist can spot potentially dangerous lesions because, under this light, abnormal tissue glows differently from normal tissue, says Dr. Sol Silverman, professor of oral medicine at the University of California, San Francisco. The light makes lesions more visible, though can’t necessarily tell if they are potentially cancerous. The company that makes Vizilite, Zila, Inc. in Phoenix, AZ. is also working on a noninvasive dye (toluidine blue) that stains abnormal tissues.
Like diagnostics, treatments are getting better, too. Historically, side effects from surgery to remove all or parts of the tongue have proved so difficult for patients to live with that some “say they might have made other decisions, like not being treated,” if they had known, says Silverman.
Without a whole tongue, some patients can’t swallow, which means they must eat through a feeding tube. If the base of the tongue, which extends down to the voice box, must be removed, patients can’t speak either, except through an artificial larynx, nor can they breathe, except through a permanent tracheotomy.
But at major centers like Dana-Farber, which now claims a 5-year survival rate of 65 percent, the focus is not just on survival but on “organ preservation,” specifically, postponing tongue surgery until after chemotherapy and radiation to minimize the amount of tongue tissue to be removed. The emerging protocol is first chemotherapy, then chemotherapy plus radiation, then surgery of the tongue and, if necessary, the lymph nodes. Organ preservation is also improving because of better radiation techniques, including IMRT (intensity modulated radiation therapy), in which external beam therapy is precisely targeted only to the areas needed to spare surrounding tissues.
For Patrice Di Carlo, all this is promising, but sobering as well. Her latest surgery, in August, removed much of the base of her tongue and part of the back of her throat. The cancer now appears to be spreading. She can still swallow and speak. “Where I go from now ,I don’t know. How much can one person take. I am a fighter. But this time, I am having a very difficult time.” But it may be in her blood vessels. Her advice? If you have any spots in your mother that lasts longer than several weeks, she says, “get it checked out.”