April marks Oral and Head and Neck Cancer Awareness Month, an umbrella term for cancers that generally involve the mouth, throat, tonsils, larynx and nasopharynx. At one time, these cancers were rarely discussed in public. But now, thanks to such celebrities as Michael Douglas, whose journey with stage IV throat cancer was chronicled in just about every media outlet, oral and head and neck cancer is finally being brought to light. And that’s a good thing as it represents the fifth-most-common cancer worldwide, with more than 500,000 new cases diagnosed each year—100 each day in the US. Indeed, the American Cancer Society recently announced that in general, cancer was down—with the exception of head and neck cancers, which were up considerably.
Historically, the traditional risk factors associated with this type of cancer are tobacco and alcohol use, as well as spontaneous genetic mutations. However, Dr. Brian L. Schmidt, director of the Bluestone Center for Clinical Research at New York University College of Dentistry, says that exposure to the papilloma virus (HPV-16), the same strain that is responsible for the vast majority of cervical cancers, is also a major contributor to the increasing rate of oral cancers. What was once a predominately male disease is now occuring more in both men and women, and in patients at a younger age.
The purpose of this column, though, is not to dwell on the negative. It is to give you, the survivor, assurance that no matter how dire the diagnosis, there is life after head and neck cancer. Years ago, the only hope for recovery was what is called “commando”— or highly aggressive—surgery. Today the latest treatments and techniques are much less debilitating and give survivors a better chance to retain or regain their quality of life.As a result, patients are not only living longer, they have a much greater potential for returning to their normal activities.
Dr. David G. Pfister, chief of the Head and Neck Oncology Service at Memorial Sloan-Kettering Cancer Center in New York City offers more encouraging news: “We are no longer satisfied with just cure and survival. We want to provide patients with optimal treatment to ‘beat’ their cancer while minimizing the side effects, both short and long term, from their therapy. Working with patients to maintain a high standard for their quality of life going forward is a very important priority.” To accomplish this, Pfister’s team uses a personalized approach, carefully considering both surgical and non-surgical options and integrating rehabilitation techniques, such as swallowing exercises and acupuncture, often even before the actual treatments begin. Paying close attention to proactive symptom management, attentive and regular communication with each patient regarding plans, options and what to expect, and careful coordination of efforts are all emphasized. And there is enormous potential in the treatments themselves. “Understanding of the molecular biology of tumors has grown significantly,” he continues. “We have identified ‘drugable’ tumors that respond to targeted therapies that cause much less of the more typical side effects of chemotherapy, and there are exciting new drugs in the pipeline. Less-invasive robotic surgical techniques and advances in the targeted delivery of radiation offer great promise as well.” In essence, Pfister’s hopeful message is that even if your diagnosis is stage IV, it is indeed a potentially curable problem and patients regularly have a good quality of life after treatment, returning to what they enjoy.
Hope was certainly there for 49-year-old Denise DeSimone, author of From Stage IV to Center Stage. She was healthier than most people she knew when she was told she had fast-moving stage IV throat and neck cancer. But surprisingly, she chose not to battle it, but to learn from it. “The presence of cancer was the best present I ever received,” says DeSimone. “But it was a difficult one to accept. I knew it was given to me because I was healthy and I could handle it, but it was also daunting to realize there was nothing I could have done to prevent it.”
DeSimone stayed positive during rigorous treatments, vowing that should she live, she’d become an inspiration to others. And she did. Although she was told she’d never sing again, just 22 months after diagnosis, she sang the National Anthem before Boston Red Sox fans at Fenway Park. One month later, she pedaled 87 miles in one day to raise money for children’s cancer research.
My co-worker was also diagnosed with stage IV base of tongue cancer more than 20 years ago. It was his arduous odyssey through treatment and beyond that helped him come to the conclusion that feeling Better Than Before required more than just eating kale, exercising and thinking happy thoughts. His remarkable recovery proved that survivors need to incorporate 12 different lifestyle disciplines into their day to get where they should be. Side effects are inevitable and at times brutal, but it’s the way you deal with them that makes you either succeed—or succumb. Worrying was a luxury that he couldn’t afford. So he stopped agonizing over things that could go wrong (read: recurrence) and focused on how he could move forward. Killing the cancer may be in the hands of your oncologist, but taking it to the next level—improving your quality of life—is entirely up to you.
Rather than thinking of yourself as a survivor and treating life as a battle, consider that you have been admitted to an extremely exclusive society—the Oncology Alumni Club. Certainly no one wants to be a member, but you already are. You have paid your dues, so start to reap the benefits. Says Guliana Rancic, herself a cancer survivor and star of E! News and the Style Network’s Guliana & Bill: “You will come out of this experience stronger with more meaning to your life. And your spirit will be inspiring.” And by following the 12 lifestyle disciplines below, you also will be Better Than Before.
Check it out. It’s one thing to make the best of cancer once you’ve had it, but it’s even more important to diagnose early enough so that the treatments aren’t too difficult to apply. According to Dr. Michael Alfano, executive vice president of New York University and former head of its College of Dentistry, “The early lesion of oral cancer is almost always visible in plain sight, at least to dentists and physicians whom we trust to diagnose the condition. Therefore, we need to continue to inform the citizenry about oral cancer so that they press their dentists and physicians to perform the simple examination necessary to identify oral cancerous tissues early enough that the disease can be cured with simple methods.” (The Oral Cancer Foundation is partnering with dental offices around the country to open their doors to the public to do free screenings in their own communities. For more info, click onto: http://oralcancerfoundation.org.)
Be powerfully positive. “I have always described my treatments as ‘a walk in the park,’” says stage IV oral cancer survivor John Ross of Lawrence, Kan. “Now, we all know that they are no walks in the park. But telling myself that was one of the many mental weapons I had at my disposal to confront the challenges that accompany cancer treatments. Some people use imaging, as I did. Others use their faith. Anything that helps you take the next step is the right mental attitude for you.It can be all too easy to sink into negative thoughts. But one thing I learned from other survivors—the ones who do the best have come to realize that the cancer is not always in control. They are always in control. You can’t control what life may hand you, but you can control your attitude toward life. “
Smoothie operator. Many survivors complain that food either never tastes the same, or they have difficulty eating, and therefore continue to lose pounds long after their treatments have been completed. Therefore, it is important to get the appropriate vitamins and minerals to both feel better and maintain a healthy weight. Supplemental calories and meal replacements can be found in such drugstore products as Ensure and Boost. But why not make your own using nutrition powders available in health-food stores or online. They should be organic, if possible, and include protein, fiber and probiotics, and not added sugars, hydrogenated oils, preservatives or anything artificial. If they aren’t organic, then make sure there are no GMOs, pesticides, herbicides or irradiation. (I personally like the ones from www.livingfuel.com.)Here’s an easy recipe for a Chocolate Banana Smoothie you can drink twice a day: Blend together 8 ounces ofunsweetened organic almond milk, 1/2 frozen banana, 2 scoops of Living Fuel’s LivingProtein, 2to 3 tablespoons of organic unsweetened cocoa, 1 tablespoons of organic almond butter, 1/2 teaspoon cinnamon, and 1/4 teaspoon nutmeg.
Make exercise routine. “I believe that physical fitness is the cement that builds a path to a healthy body and mind,” says Bob Harper, fitness guru of ABC’s The Biggest Loser and creator of BobHarper’s Smart Success. “In fact, I have seen survivors who have dealt with many physical struggles handle their situation with much more grit and determination because they put exercise at the top of their ‘to do’ list. It not only makes you feel better physically, it strengthens the mind, and when your mind is sharp, you can better handle any given situation that comes up.” If you don’t have the desire to get off the couch, let alone take a spin class, Bob encourages you to find the motivation to simply go outside and walk around. The sunshine and vitamin D will help build strength and brighten your spirit. Even something as easy as doing calf raises while sitting down helps build muscle.
Slather up. “Botox and other facial fillers can be exceedingly effective at improving appearance, function, and confidence after post-surgical procedures, even when they have been fairly radical,” says Dr. Michelle C. Abadir, a dermatologist and associate professor at Albert Einstein Medical College, “so consult with either a dermatologist or a plastic surgeon to see what options would work best you. Also, intense radiation thins the skin tissues and damages the oil glands that create normal secretions so your skin, in turn, is extra dry.” To that end, slather on super-hydrating emollients daily, especially at night. Look for hydrating sheet masks or products that contain olive, avocado or coconut oils, cadula, aloe or Hyaluronate and don’t contain fragrance, dyes, parabens or formaldehyde. When buying makeup, especially mineral foundation, check to make sure there is no Bismuth Oxychloride because it can cause allergic reactions and further irritate sensitive skin.
Breathe easy. “Meditation can help you understand that we are much more than our egos and our physical bodies,” says Daniella Mika Nagel, director of the Chopra Yoga center in Vancouver, Canada. “It can bring you into the silence that is already inside you but often cluttered up with thoughts. In this state of silence, we are free from fear, anxiety and stress.” Try Daniella’s simple technique at home each morning and evening: Sit comfortably in a chair or lie on the floor. Gently bring your awareness to your breath. Notice your inhales and exhales without controlling them. Continue breathing effortlessly. Start repeating the phrase I am healthy, I am strong, silently to yourself. Even if you do not feel healthy or strong, continue repeating this phrase. There is power in your thoughts. What you think, you become. Sit for the next 20 or so minutes, repeating the above phrase. When you notice another thought coming into your awareness, gently let it go and come back to your affirmation. Remember to take time to come out of your meditation practice by lying down for a few minutes to rest.
Paws for effect. Research shows that good relationships can help you heal—even relationships with pets. Social connections can diminish when you have cancer if you’re too sick or distressed to engage with others. Sometimes friends and family retreat because they are at a loss for how to help. Harvard physiatrist Dr. Julie Silver surveyed survivors for her book, What Helped Get Me Through. “Many people mentioned how much comfort their pets gave them,” she says. “Walking their dogs got them out of the house and talking to neighbors. Some adopted a kitten or a puppy, which entertained them with their antics and snuggled with them when they needed comfort. A connection with a pet can be great support—and powerful medicine.”
This is your moment. “Many survivors have forgotten how to be still and live in the moment; to see the beauty in each other and great Mother Earth. If they did, they wouldn’t worry about yesterday or tomorrow,” says Colleen Costello, author of the spiritual guide Who We Are. “Spirituality is about knowing that you are more than just a body and are never alone. Indeed, you are one with the Divine who considers you perfect in every way and who will always help when asked.”
Support the arts. ”It is vital to find outlets that will enable you to maintain a healthy lifestyle after a trauma occurs,” contends Susie Werle Larkin, an art therapy instructor in Belleville, Ill., and author of Marginal. “And the best way to redirect your focus to overcome any obstacles over time is by using the creative side of your spirit.” To that end, Susie suggests that survivors move toward a positive future through any type of expression of art. Join an art class, a dancercise program, an innovative support group. “Confront your fears, and express your hopes and emotions openly and creatively through some form of art,” she says. “Your heart will begin to flourish and a positive attitude will replace a negative hopelessness. Eventually, you will realize your strengths, judge less and help others more.”
Think inside the box.“The ability to reach out using the Internet, along with advances in technology, make it possible today to connect with anyone at any time,” says Ian Small, CEO of TokBox. “And that’s especially useful as people recover from illness.” Group therapy and personal contact can be a critical component of a successful recovery, but they usually require leaving the house. For some patients, that can be difficult or downright impossible. But now, with innovations such as OpenTok technology from TokBox, groups such as Friends’ Health Connection and others make it easy for anyone with a computer and a webcam to overcome those feelings of isolation or loneliness and get help, support, and companionship. Patients in recovery can get connected to the people and groups they need most via video chats that keep them engaged and on the road to better health.www.tokbox.com.
Score goals. “Setting recovery goals, regardless or how small, will yield big results,” continues John Ross. “The goal of eating Thanksgiving dinner with family is one that worked for me. I was able to eat my first steak with my wife for our anniversary over Labor Day, a full three months ahead of my Thanksgiving goal. There is no way to describe the joy that accomplishing a personal goal brings.” It is both inspiring and motivating in your quest for complete recovery.
Walk with purpose. If you are planning to be in the New York City area on Saturday, April 28, 2012,join students from New York University College of Dentistry and from other local chapters of the Student National Dental Association (SNDA), in partnership with the Harlem Hospital Center, the Greater Harlem Chamber of Commerce, NYU, Columbia University, and Renaissance Health Care Network, who will lead New York City’s fourth annual Oral Cancer Walk to raise awareness of oral cancer. Free oral cancer screenings will be available (regardless of whether or not you have registered to walk). The first 600 registered walkers will receive free T-shirts with the Oral Cancer Walk logo and great prizes for the three walkers who raise the most money and the walker who brings the most walkers. And all proceeds go to the Oral Cancer Foundation. For more info, go to: www.oralcancerwalknyc.org