• 6/10/2007
  • Burnsville, MN
  • Brooke M. Walsh
  • ThisWeekOnline (www.thisweek-online.com)

No one thought Amy Gust, of Farmington, had oral cancer when she developed a persistent sore spot along her gum line in May 2006 — as a 37-year-old woman who rarely drank or smoked, she didn’t fit the perceived profile of someone who would contract oral cancer.

But after months of mouthwash and exams, Amy was diagnosed with squamous cell carcinoma of the gingiva, “which is basically a cancer of the gums,” she said.

What she, her dentist and doctor now know is that, as the 6th most common cancer in the United States, oral cancer affects many outside the perceived risk group.

About 34,000 people are projected to be diagnosed with oral cancer — including cancer of the mouth, inner lip, tongue, salivary glands, pharynx, larynx and sinuses — in the U.S. in 2007, which is an 11 percent increase in new diagnoses since 2006.

“Of them, 50-percent won’t be alive in five years, and that’s because it’s not being diagnosed early —it’s already spread places,” Amy said.

It was in May 2006 that Amy first noticed what she thought was something stuck deep between her teeth.

“It didn’t hurt or anything, it just felt like I had food caught,” she said.

A week later, at her regular six month dental check up she pointed it out to her dentist, who performed an oral cancer screening — examining her face, neck and mouth both internally and externally, visually and through touch, in all of the places oral cancer might develop, especially where she complained of discomfort.

The screening was negative for cancer and he sent Amy home with a prescription for Peridex, a powerful mouthwash.

She bought the mouthwash and used it, but the sore did not go away; in fact, by September it started to hurt.

In October, a month before her next six month check-up, Amy went back to the dentist because the sore had still not healed. Her dentist thought maybe the sore was due to trauma or an infection and prescribed antibiotics, but advised her to return in 3 weeks, whether or not it began to heal.

Three weeks later, nestled into her dentist’s chair for a scheduled cleaning, her dentist finally spoke the words she feared.

“He said, ‘It’s possible that this is cancer,’ and I was freaked. I mean, I was freaked-out,” Amy said.

While the hygienist meekly cleaned her teeth, others in the office scheduled an appointment with an oral surgeon for the same day.

Amy headed from the dentist’s office to the oral surgeon’s, where she was reassured that it was probably not cancer.

“I said, ‘I’m scared this is cancer,’ and she said — first words out of her mouth — ‘Cancer doesn’t hurt,’ ” Amy said.

Then, the surgeon listed a litany of other reasons that her mouth discomfort was mostly likely not cancer:

• Oral cancer is more likely to occur in men than women.

• Oral cancer does not commonly occur in people under 40, “certainly not in a woman your age,” she recalls her doctor saying.

• Oral cancer doesn’t usually occur in the location of Amy’s sore. It’s usually in the floor of the mouth or tongue, whereas Amy’s was in her gums.

• Her sore did not look like cancer to the doctor.

The biopsy was performed and Amy waited two weeks to get the result, while family and friends reassured her with similar myths about cancer.

Since then, Amy has learned the facts about oral cancer — that in decades past men were six times as likely to be diagnosed with oral cancer than women, but are now only two times as likely, and that cancer can hurt.

“My biggest message that I’d love to shout from the rooftop is: If it hurts, it could just as easily be cancer as if it doesn’t hurt,” Amy said.

While her doctor’s doubt that Amy’s sore was cancer did not lead to a delay in her eventual treatment, it did increase the severity of the emotional roller coaster on which she was riding.

Amy, who is mother to three children ages 5 and under, lost her own adoptive mother to cancer when she was 8 and knew how difficult it was to grow up without a mother. Throughout the entire process, but especially while waiting for diagnosis, she was particularly concerned about her children and husband, Brad.

“I really wish (my doctor) would have just said, ‘I don’t know what it is. It’s possible it’s not cancer, it’s possible it is,’ ” Amy said.

Amy was out shopping for supplies for her middle child’s birthday party when she finally received a call from the doctor’s office asking her to come in to talk about the results. When the doctor walked into her room with an assistant carrying a box of Kleenex, she knew she had cancer.

“It was a horrible day. It was a horrible, horrible day,” she said.

She returned home and prepared to cook a tater tot hotdish she had assembled earlier in the day, but her husband refused, saying, “ ‘We might have crappy news, we still should have a better super than tater tot hotdish,’” she said. “So I got in the car and then I ran over to the grocery store and picked up steaks. … We had a nice dinner that night.”

Oral cancer can develop in the mouth of anyone regardless of age, sex or race.

Smoking and chewing tobacco have long been associated with oral cancer and tobacco consumption, in all its forms, is the biggest known risk factor for developing oral cancer, with 75 percent of all patients diagnosed with oral cancer being tobacco users.

Alcohol use is also a significant risk factor for developing oral cancer, particularly excessive use, which is defined as more than 21 drinks in a week. Alcohol abuse is the second largest risk factor for developing oral cancer.

Conditions associated with significant alcohol consumption, such as cirrhosis of the liver and malnutrition, also contribute to the development of oral cancer, partially because they lower the body’s natural ability to use antioxidants to prevent cancer formation.

In addition, the combined use of alcohol and tobacco poses a particularly high risk for developing oral cancer because the two substances work synergistically. People who both drink and smoke are 15 times more likely to develop oral cancer than those who do not.

When it enters the mouth, alcohol begins to dehydrate the cells within the mouth, making cell walls more permeable and susceptible to damage from carcinogens in tobacco.

Eliminating the use of oral tobacco and eliminating or reducing the use of alcohol can dramatically reduce a person’s risk for developing oral cancer. It is estimated that after taking these steps for 10 years a person’s risk for developing oral cancer returns to the level of non-tobacco or alcohol users.

Amy drank and smoked occasionally, though she hadn’t for the last five years because of pregnancies and time spent breast feeding, but her oncologist did not think these contributed to her risk for cancer.

“I mean, [oral cancer is] not just for people who drink and smoke and chew tobacco, I mean, it’s not,” she said.

In fact, founder and Executive Director of the Oral Cancer Foundation Brian Hill spends most of his time trying to dispel the myth that patients who smoke and drink are the only ones who need oral cancer screenings.

Hill says that many scientists believe that the Human Papillomavirus (HPV) types 16 and 18— the same types that cause 95 percent of all cervical cancer — are also causing oral cancer to develop. Scientists are currently researching the subject.

“It will take some time before there is conclusive evidence that this is the cause,” Hill said, but researchers already know that something besides tobacco and alcohol is causing oral cancer.

Though tobacco and alcohol use in the United States has been steadily declining in the last decades, oral cancer rates have either stayed the same or increased from year to year.

It is possible — and, Hill thinks, probable — that the same HPV vaccines being developed to prevent cervical cancer will also protect people from contracting oral cancer.

HPV 16 and 18 are known to be sexually transmitted, but unlike many other sexually transmitted diseases, HPV is transmitted through skin-to-skin contact, not through fluid transfer. Therefore, condom use will not necessarily prevent someone from being exposed to the virus.

Limiting a person’s number of sexual partners can reduce their risk of contracting the viruses. However, scientists are studying whether the virus can be contracted in other ways, such as through kissing.

As scientists continue to uncover the relationship between HPV and oral cancer, Hill says there will need to be a shift in the treatment of oral cancer.

In the past, Hill said, dentists and doctors didn’t think about the way someone contracted the disease when treating them. In the future, this will be an important step in improving survival odds.

Though the current overall five-year survival rate for people who contract oral cancer is 50 percent, the rate for those diagnosed early is much higher. For this reason, early detection is one of the most important elements of oral cancer treatment.

“When you find cancer early, it’s survivable; when you find cancer late, it’s not so survivable,” Hill said.

Amy’s own experience with early detection has led to swift treatment, and her prognosis is good.

She was quickly referred to the Mayo Clinic, where she underwent surgery to remove a portion of her jaw.

In the future, Amy will undergo a reconstructive surgery that will take a portion of bone from her hip that will be used to rebuild her jaw. Later, new teeth will be added.

Although Amy has had to adjust to the physical aspects of having cancer, the emotional aspects have been the most difficult.

Amy said she now finds her self constantly feeling and looking within her mouth, and every time she scrapes the inside of her mouth or bites her cheek she wonders if it’s cancer coming back.

Having cancer has also made her re-evaluate how she spends her time.

Shortly after being diagnosed she was eating dinner with her family when her eldest daughter, Samantha, asked if they could drive around and look at Christmas lights after they finished eating.

“I said, ‘Yeah, we can, we can go now.’ And she looked stunned,” Amy recalled.

Her daughter then began asking if Amy needed to clean up first or do other household chores and it made Amy realize how important spending time with her children is.

Overall, she feels very lucky to have had the experience with cancer she has had and sometimes feels guilty knowing that there are many people who have much worse treatments and prognoses than she did. Then a co-worker changed her perspective.

“She said, ‘How about putting a spin on it and saying, ‘Early detection saves lives, I’m living proof,’ ’ and so that’s kind of what I am going to go with,” Amy said.

Now she is working on raising money for the cause.

“The Oral Cancer Foundation is an organization that I believe in. I am going to send out a letter to everybody I know, soliciting a donation,” she said.

“What I want to do now is just help other people — get the word out about this and quit worrying about folding laundry and stuff. That’s not that important, really.”