January 2007, Volume 3, Issue 1
Published by AEGIS Communications
Two Faces of Oral Cancer
Brittney Fiorini Jerred
Survivor’s New Mission and a Caregiver’s Compassionate Reflections
Everyone who survives or succumbs to oral cancer is inflicted with some degree of suffering and pain. Trauma, grief, and, hopefully, an eventual healing touch those both directly and indirectly affected by this devastating, debilitating, and physically deforming disease.
The American Cancer Society reports that there are 30,990 new cases of oral cancer in the United States each year.1 Statistics say of those, 7,430 people will die this year. While the numbers reveal how powerful this disease is, some of the individuals personally affected by oral cancer are even stronger. They’re passionately reaching out to diverse audiences to tell their stories of what it’s like to live through treatments and beat the odds, or to watch a loved one die.
The stories of their experiences are moving across the Internet and gaining media attention. In some instances, their messages are emphasizing the importance of early detection. If detected early, oral cancer is highly survivable: 82% of those diagnosed survive oral cancer if it’s caught in the early stages.1 Or, their voice of compassion is lending hope and support to fellow caregivers struggling with questions or the heartachethat comes from witnessing the suffering of a loved one.
Here, Inside Dentistry shares the heart-wrenching experiences of two people whose lives were dramatically affected by oral cancer—and in different ways. Neither smoked, nor were they high-risk candidates, yet the disease changed one’s life forever and took the life of the other. One was a successful entrepreneur; the other was a feisty and vivacious mother and wife who just wanted to live to raise her daughter. One had access to one of the best cancer treatment centers in the world, while the other was at the mercy of her employer’s insurance plan and dissuaded from being treated at a top-notch center.
Since overcoming the disease, one man has made it his life’s work to teach others aboutthe importance of early detection and regular oral cancer screenings. In the aftermath of her 29-year-old daughter’s death, one mother keeps her memory alive by helping to prevent someone else from experiencing the same agony, misery, and eventual loss that her family had to endure.
The Fight of His Life
According to the statistics, the chances that Brian Hill would survive were slim. And, even if he did, the odds were good that his cancer would reoccur. But he is a survivor, and today he’s leading an international public awareness campaign about the importanceof oral cancer screenings.
Brian’s ordeal with oral cancer began 8 years ago. His dentist did not find the lesion; his doctor did when it was almost too late. Brian felt a painless lump on the right side of his neck. He went to an ear-nose-and-throat (ENT) doctor, who placed him on a course of antibiotics because he thought there was an infection draining into his lymphnodes. When the antibiotics didn’t reduce the size of the lump, the doctor referred him to a second ENT for further evaluation.
This second opinion changed Brian’s life. A fine-needle biopsy revealed that he had cancer. The lump on his neck was not the main disease; it had started in his mouth. As Brian held a hand mirror, his doctor pointed to the culprit in the back of his mouth: a dark lesion about the size of a nickel on his tonsillar pillar that was highly visible to the naked eye. This was the primary tumor, and the lump on his neck was a metastasis of the disease outside of his oral cavity—a location that gave the cancer full access to the rest of his body via the lymph pathways.
By the time he was diagnosed, Brian had stage four oral cancer—and there are only four stages. When he was told that the lesion had been there for at least a year, his mind raced with questions because he’d had a crown placed only half an inch away from it just 6 months before the lump appeared on his neck. His dentist had spent hours in his mouth preparing the tooth, taking impressions, and cementing the crown over three visits.
To Brian, it seemed that the dentist or hygienist should have seen this very obvious condition before it reached such a critical, life-threatening stage. The lesion was only half an inch away from the new crown and dark red in color, unlike the rest of the tissue in his mouth. Adding to his questions about how it could get this far was the fact that he later learned that this is one of the most common lesions associated with squamous cell carcinoma—an erythroplakia.
“I had dentists that I had seen for years and had high confidence in. I even had a background in the dental field, but this didn’t include any knowledge of doing self-examsfor cancer. Oral cancer was nowhere on my radar,” Brian said.
He decided to be proactive about his treatment. Because he was a stage four patient, he didn’t have much time. Rather than go to his local hospital, Brian relocated to Houston, Texas, where he was treated at M.D. Anderson Cancer Center, one of the best cancer hospitals in the world, he said. The top-notch care he received there played a major role in his survival, he believes, and he knew if things took a turn for the worse, he’d have access to state-of-the-art equipment and clinical trials.
“Loss of control is a big issue for cancer patients. The single most important decision that you have control over is choice of treatment facilities and being in the hands of a state-of-the-art, multidisciplinary team. I definitely think this was a factor in my survival,” Brian said. “I am very cognizant that with health care in the US there are many issues thatprevent individuals from attending these kinds of facilities. HMO medicine, financial issues, insurance restrictions or lack of it, and the many real health care disparities that are part of the medical landscape in the US all affect the choices our population can make in obtaining quality health care.”
Brian underwent 7 weeks of radiation treatment followed by surgery that removed two malignant lymph nodes, muscles, nerves, and tissue on the right side of his neck. Though painful, the treatment was a success. His healing process took 3 years in total, and he encountered many difficulties along the way.
WHAT HE KNOWS NOW
After undergoing his own treatment and healing process, Brian learned that much of the reason that the death rate from oral cancer is so high is because it is routinely diagnosed as late stage (ie, three or four) disease. “When found early, the disease is highly survivable, but 66% of the time, that doesn’t happen. Poor public awareness of the disease and its risk factors, combined with too few professionals aggressively engaged in providing a routine annual screening, are primary obstacles to bringing the death rate down,” Brian said.
“This came out of nowhere. It blindsided me,” Brian said. And, statistically speaking, that’s not surprising. Brian was an athlete; he never smoked; he was conscientious of what he ate; he wasn’t a heavy drinker. He also had a background in dentistry—he ownedhis own dental implant company and was very dentally aware.
Testing showed that he is one of the 25% or so who come to this disease via the human papilloma virus (HPV), not from the more common cause—tobacco use. This is the same virus responsible for the vast majority of all cervical cancers. Its role in oral cancers is now well established, and it is easily transferred between people through sexualcontact, Brian explained.
ORAL CANCER FOUNDATION BEGINS
Brian considers the time he has now as a survivor a gift, and he wants to use that time in a meaningful way. That desire manifested itself as the Oral Cancer Foundation (OCF), a non-profit organization that he founded 5 years ago. The foundation’s mission is to help save lives through prevention, education, research, advocacy, and support, according to the site.2
OCF is focused on raising public awareness of this disease—one that the general public hears little about in comparison to cervical, breast, prostate, and colon cancer. OCF encourages doctors, dentists, and hygienists to perform oral cancer screenings like those routinely performed for the previously mentioned types of cancers. With early detection, chances of survival can reach 90%, Brian notes.
“After all, in those cancer types where we have seen the greatest reduction in death rates, it has come primarily from early detection,” he says.
Public awareness is key, Brian says. An informed public will ask for annual screenings when they understand not only their importance, but also that for this type of cancer, they are quick, painless, and inexpensive. But, in order to save lives, the public must be involved on a national level.
To increase public awareness nationwide, the OCF uses highly visible, free public screening events, television public service announcements delivered by celebrities like Blythe Danner and Jack Klugman, print media ads, and articles in venues as diverse as the Wall Street Journal, Woman’s Day, and People Magazine. Brian himself has been interviewed for countless news stories and appeared on television news and talk shows.
HOW HE LIVES LIFE NOW
With a schedule that has him traveling as far away as Crete to speak at the World Health Organization Oral Cancer Conference or to the offices of directors at branches of the National Institutes of Health in Washington, DC, Brian’s schedule is full and his life is never dull. He realizes that changing policy and raising awareness is an uphill battle, but he says he feels incredibly fortunate to be here to do a job that’s fulfilling.
“I get to interact daily with patients who inspire me constantly with their inner strengths as they face the difficult treatments and challenges ahead of them,” he said. Accolades and awards for public service have come his way, but according to Brian, all these pale in comparison to thanks from a patient who has been helpedby OCF.
Brian says that undergoing treatment for and surviving oral cancer has left him a changed person in many ways. There are residual physical effects like acute xerostomia from the radiation treatments that destroyed his salivary glands, requiring him to sip water every few minutes, as well as the facial numbness, eating and speech issues, and other physical limitations. However, Brian considers these minor inconveniences a small price to payto still be here.
Brian is 8 years out from his diagnosis. The odds of him surviving this long without a reoccurrence were against him.
“I’m so glad to be on this side of the grass,” Brian jokes. “I used to be a very self-centered person. Today, my views on what is really important in life have radically changed. I am a better person than I was before this experience, and I’m so gratefulfor the quality of life I have.”
A Parent’s Greatest Heartache
Since Brian started the OCF and its Web site, millions have visited the site and found friends when they were in need. There’s an interactive forum that allows members to make postings 24/7. People can post questions in different categories and sometimes, within minutes, there is a response to their concerns. Caregivers and oral cancer survivors have found hope and friendship through the message boards and advised each other on topics ranging from chemotherapy to problems swallowing, as well as eating and the depression that accompanies any long-term or life-long illness.
Rosemary “Rosie” Michael knows full well how helpful those message boards can be. They gave her hope when her daughter Heather battled and ultimately lost her life to oral cancer 3 years ago. Though the pain has numbed somewhat since then and the vivid images of her daughter’s horrible suffering have muted, she doesn’t want to forget what her daughter endured. She wants those memories to continue empowering her to help others.
That’s why she’s compiling the story of her daughter’s battle with oral cancer and hopes to one day have it published. It recounts Heather’s suffering, the doctor’s advice, her treatment, the family’s feelings, and the way the insurance company handled the situation, and it includes pictures of her daughter’s poor, ravaged body to help people understand what an unyielding monster oral cancer is. Rosie does not disguise the facts: the ordeal was gruesome and no one should have to die that way.
Heather’s battle with cancer began in 2002. She was among the few whose dentists screen annually for oral cancer. The screenings didn’t reveal anything to suggest oral cancer, but Heather started experiencing problems she couldn’t ignore. She was having difficulty swallowing and had pain in her ear. She went to an ENT who didn’t see anything but ordered a CT scan to investigate the trouble she was experiencing. While she waited for the scan results, a white lump developed on the back of her tongue. At Heather’s next visit,the doctor pressed on this area and incredible pain shot through her head. He ordered a biopsy and soon after, Heather was told she had cancer.
The news troubled Heather and her family because although the doctors diagnosed the cancer with the biopsy after spotting the lump, the CT scan was negative. What’s more, Heather’s pursuit of a diagnosis went on for 31/2 months before the tumor was detected. Prior to the biopsy, doctors did not suspect cancer. The biopsy, however, revealed a tumor buried deep beneath the mucosa. By this time, however, doctors estimated the disease to be at stage four. Surgery needed to be aggressive.
“The doctor explained that they were going to open her jaw like a book,” Rosie said. They removed the tumor, part of her tongue, two teeth with some gum tissue and all of the lymph nodes on one side of her neck, three of which were cancerous.
“It went well. They had clean margins and everything,” Rosie said. However, although the surgery went well, Heather continued experiencing difficulties and didn’t seem to be healing. She developed a fistula and also lockjaw; she could fit a straw through her teeth at best, Rosie said. A feeding tube was inserted into her stomach to ensure she received nutrients, but complications arose. Heather became nauseous when they tried to feed her and, within a few months, she lost 60 pounds.
Heather was also enduring radiation treatments that, coupled with post-surgery complications, made her grow weaker. Radiation ended in January and in March, Heather and her family learned she still had cancer. Another tumor had invaded her spine and destroyed the fifth vertebrae in her neck, causing her pain that morphine couldn’t touch.
Her family had reached a crossroads in their decisions concerning her medical care. They could let the doctors operate again, remove the tumor and let Heather undergo chemotherapy after she recovered from surgery. Or, they could let Heather have chemotherapy first and pray it would be enough to reduce the tumor. The problem with the first option was two-pronged: doctors said there was a chance spinal surgery would paralyze Heather, and they would have to delay chemotherapy. They opted for chemotherapy without spinal surgery, but the pain and complications became unbearable. Rosie tried to convince her daughter to have surgery, but the risks of paralysis were too great in Heather’s mind.
REACHING OUT FOR OTHER OPTIONS
Rosie and her family could no longer stand by and watch Heather suffer, and the medical decisions were taking their toll on all of them. Though Heather had one of the best surgeons in Pennsylvania and a top-notch oncologist, the family thought she needed to be at a cancer center. Rosie fought with Heather’s insurance company to have her treated at Johns Hopkins, which is renowned for its cancer treatment center and where patients are assigned a team of doctors who confer on each patient. At the regional hospital, doctors were not communicating with one another about Heather, Rosie said, and she knew her daughter deserved better care. Rosie was successful in getting the insurance company to pay for a consultation at Johns Hopkins, but they were told that the consultation was all they were willing to cover.
“I should have left her at Johns Hopkins, but we came back home,” Rosie said. “The consultation did help because they gave us a plan for chemotherapy treatment.” Unfortunately, the complications kept mounting.
Heather had an 11-week stay at their local hospital that began in April 2003. She was so bloated and her tongue so swollen from illness that she became unrecognizable. Doctors thought her tongue would self-amputate from her teeth pressing on it.
“Her own daughter, who hadn’t seen her in a few days, didn’t recognize her as being her mother when she came to the hospital,” Rosie said.
When the chemotherapy eventually started to work and the swelling diminished, the family was more hopeful. Rosie and Heather’s sister, Alicia, took turns staying at the hospital in 24-hour shifts. Heather’s husband, Dean, cared for their daughter, Cati, at home. Day and night her family was there. They learned about her medications, her feeding tubes, and how to manage her tracheotomy. Because Heather was so weak, she couldn’t cough up phlegm from her own throat, so Rosie and Alicia had to suction the mucous out when it obstructed her breathing.
The family had had enough of hospitals and, in June, Heather went home. Doctors allowed Heather to go home because her loved ones had learned so much about how to manage her medications and her breathing. Heather fought until October, when she finally conceded to let Hospice come into the home. The first week Hospice nurses arrived, Heather died.
VENUES FOR SHARING & CARING
Even when her daughter was sick and dying, Rosie inspired others to keep their hope. Visitors to the OCF forum have followed Rosie’s story with great interest and grown to respect her as an advocate, as well as someone who suffered the greatest loss any parent can imagine. She’s now able to describe her daughter’s ordeal without crying, a feat she considers an important milestone as she works to recount the details of Heather’s life and her suffering for others.
Time has helped Rosie heal and allowed her to become more of an advocate for her daughter and oral cancer awareness. She has participated in walks as part of screening and awareness campaigns, and her posts on the OCF message boards counsel those who are grieving themselves.
She writes to friends she has never met on the message board with great candor. So it’s not surprising that people who know Rosie’s prose have encouraged her book.
It spares no details about what Heather had to endure because she wants people to know how her daughter suffered. If people get the whole picture, Rosie says, perhaps it will inspire them to quit smoking or follow their own instincts when it comes to their health. She’s a firm believer in second opinions, and she encourages people to fight insurance companies if they’re not getting what they need.
Rosie hopes her words will one day reach a larger audience so she can tell the world about her daughter and what kind of person she was—a unique, outgoing individual. She wants people to understand that oral cancer can happen to anyone, and it did claim the life of her daughter Heather, a young woman, a non-smoker, a mother herself.
Oral cancer is not a faceless disease. It changed Brian Hill’s life forever. And it claimed the life of a young woman who was a loving daughter, sister, wife, and mother. In Brian’s mind, if oral cancer could happen to him, it could happen to anyone. The OCF is his mechanism by which to educate the public and advocate for annual screenings. For Rosie, the OCF forums have empowered her to share her daughter’s story and help others cope with the heartbreaks that loved ones and caregivers of oral cancer patients must endure themselves. In their respective ways, each is transforming their personal experience with oral cancer into something that they hope will make others meaningfully aware of the disease and its potentially devastating consequences.
1 Oral Cancer. American Cancer Society. 2006. Available at www.cancer.org/downloads/PRO/oralcancer.pdf. Accessed Oct. 21, 2006.
2 Oral Cancer Foundation. www.oralcancerfoundation.org. Accessed Sept. 20, 2006.