Roy Heyen lived like a recluse in 2010 after an operation to remove a basal cell skin cancer on his nose left him with a silver dollar-sized hole on the left side of his face. Reconstructing Heyen s face required a half-dozen surgeries stretched out over a year. He kept it covered most of the time.
I was like a rabbit in a hole, says Heyen, 53, a former food service manager at a South Texas prison. At first he didn t leave the house. Then he d venture out only at night. Heyen eventually summoned the courage to go outside in daylight. Yet even the most casual encounters with friends and neighbors tormented him as he strategically positioned himself to conceal the left side of his face.
More than two years since his last surgery in March 2011, Heyen still catches himself mentally choreographing where to stand or how to sit when talking to someone. People who caught a glimpse of Heyen s face swore they couldn t tell he d had the surgeries. But I could tell, Heyen says. When it s you, it can t get any worse.
Body image is often an overlooked dimension of the cancer experience considered an unfortunate side effect, like nausea or fatigue, and met more with sympathy than science. But some doctors are finally taking notice: A handful of programs now focus specifically on improving body image among cancer patients.
Body Image Therapy
A wave of research confirms just how important a patient s feelings aboutphysical appearance are to self-esteem and how changes to the body can bring on social isolation, anxiety and depression. In February, researchers reported in the journal Psycho-Oncology that as many as 80 percent of patients receiving chemotherapy worry about changes in their appearance. A 2011 study published in the same journal found that three out of four head and neck cancer patients undergoing surgery are embarrassed about changes to their bodies caused by cancer and treatment. Other cancer patients become so uncomfortable with scars or weight gain that they avoid being seen by other people or looking at themselves in the mirror, as a 2012 study in Psycho-Oncology found among young breast cancer patients.
Yet very few doctors ever ask their cancer patients, How are you feeling about your body? says clinical psychologist Michelle Cororve Fingeret, who directs the Body Image Therapy Service at M. D. Anderson Cancer Center in Houston. When Fingeret asks the question, she is often answered with tears. No one has asked them that before, she says.
Established five years ago to fill that void, M. D. Anderson s Body Image Therapy Service is the first and only program in the United States to conduct research and offer one-on-one assistance exclusively for cancer patients facing body image issues. To date, more than 1,500 cancer patients have participated in the program.
Heyen was fortunate to receive counseling there for two years. Patients like him are in the bull s-eye: Fingeret s research shows that cancer survivors who receive facial or breast reconstruction are at very high risk for body image concerns. She is now testing a screening tool that doctors could use to identify which of these reconstruction patients are struggling and need help.
Marianne Kelly wishes she had help in 1986, when a 15-hour procedure to remove a hemorrhaging benign tumor from her brain left her with stitches that stretched from the top of her head to the base of her neck. Forced to wear an eye patch to correct double vision, and with acne caused by steroid treatments blanketing her face and shoulders, the then-39-year-old Baltimore native says she barely left the house for eight months after surgery. One day her husband took her out to shop for a wig. She ducked down in the back seat for the entire ride so no one would see her.
Today Kelly is the founder and director of Image Recovery Centers, in-hospital services that go beyond the usual beauty salon treatments. At her centers in 15 hospitals nationwide, trained staff members help cancer patients enhance their appearance through skin and scalp care, wigs and hats, cosmetics and breast prostheses. Many patients just want normalcy, Kelly says. They want to do the things they did before without there being this neon sign that says I m sick.
Look Good Feel Better a similar program offered at no cost by the Personal Care Products Council Foundation, the American Cancer Society and the Professional Beauty Association conducts about 16,000 workshops each year across the country. Stacey Moore, who is living with stage IV breast cancer, attended a class held in February near her home in the San Francisco Bay Area. She learned how eyeliner applied just right could fool passers-by into thinking she still had her eyelashes. But the best part for Moore was watching a newly diagnosed woman realize she could still look like her old self for her 10-year-old son. You could just tell her heart opened up, Moore says. That was good for me to see people find joy in their experience.
After cancer was found in her right breast in 2008, Moore opted to have both breasts removed followed by reconstruction. But the reconstructive surgery went awry, and the implant that had been inserted into her healthy breast had to be removed. Today, Moore sarcastically calls herself a one-hump camel. It usually doesn t bother me or my boyfriend, says Moore, noting that she only wears a prosthesis when she needs to fill out an outfit.
Yet she had been upset in 2008 when chemotherapy had caused her hair to fall out, followed by her eyebrows. The eyelashes were the last to go. I cried for about a week when I lost my hair for the first time, says Moore, who is now 47. She preferred wearing hats to cover her hair loss a black newsboy, a plum houndstooth or a red felt fedora. She revived the look in 2011 after doctors found the cancer had spread to her liver and put her back on chemotherapy.
Get Your Mind and Body in Tune
Clinical psychologist Timothy Pearman is always armed with a potential icebreaker when sitting down with a cancer patient to discuss body image: the four-inch scar running from his left ear to his Adam s apple. Six years ago, Pearman, the director of supportive oncology at Robert H. Lurie Comprehensive Cancer Center in Chicago, was treated for tonsil cancer. I try to take the stigma out of being upset by body image changes and get people to talk about it, he says.
Even before his own cancer surgery, Pearman knew the same bodily change can affect people differently. While Pearman is comfortable with his really badass neck scar, a young thyroid cancer survivor with a similar scar sought his help for depression.
Seeing a psychologist for one-on-one professional support may be helpful for some cancer patients, but many also turn to and benefit from cancer support groups, whether online or face-to-face, where they can share stories and strategies about managing body image concerns. Others find ways to manage body image worries on their own.
A strategy Pearman recommends to all his patients is exercise. It s advice echoed by the American College of Sports Medicine, which offers exercise guidelines for cancer survivors that were partly designed to help them improve their body image. Exercise improves your mood, says Pearman, and people who are less depressed and less anxious are less likely to have body image problems.
Just about any type of exercise will do the trick. Walking, yoga, strength training, resistance training, cycling, qigong and tai chi can all be effective in improving body image among patients with a variety of cancers, according to a 2012 analysis published in the Cochrane Database of Systematic Reviews that examined 40 studies done over the past 20 years.
A counseling technique called cognitive behavioral therapy can also benefit some cancer patients, especially those who have become withdrawn. The cognitive part involves teaching people to turn off the damaging self-chatter that tells them they are unattractive or that everyone can tell they are sick. The behavior part involves gradually getting patients out of the house and into society. We help patients lay out a list of social situations they can try to see how it goes, Fingeret says. Like going to the grocery store at 10 in the morning on a weekday since it ll be less crowded.
What got Roy Heyen out of the house was his hobby of restoring Mustang motorcycles. If one of these motorcycles became available or a friend got a new one, that would draw me out, he says.
He also aced the cognitive part. I finally got to the point where I was realistic. My face wasn t going to be what it was, Heyen says. I couldn t stay boarded up at home and never see anyone again. I had to live my life.
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