The Skin You're In: Coping With Body Changes After Cancer

It was Christmas day 2012 and Laura Walker was looking forward to having her niece straighten her waist-length hair before they gathered with family for a holiday celebration. But when she ran her hand through her hair that morning, her heart sank — “my hair was coming out in handfuls,” she says.

So, she tucked her hair into a headband and headed out. “I felt like I was hiding a secret,” she says. “I didn’t want to traumatize my kids. It’s funny how your kids identify you with certain things, and my hair was it for me.”

Walker had begun chemotherapy in early December after being diagnosed with stage 2 breast cancer that October. She was just 39 years old. Too young for her first screening mammogram, she’d discovered the tumor on her right breast after noticing a bulge in her skin. She saw her doctor, and things moved quickly from mammogram to ultrasound to biopsy to mastectomy at the MD Anderson Cancer Center in Houston, Texas.

Losing her breast made her feel angry and unsure, she says, adding that the experience also made her realize how much she took her body parts for granted. “It really does something to you,” she says. “You don’t feel like a woman.”

But the side effects of chemotherapy also changed the way Walker saw herself.

“I was so bitter about losing my hair,” she says. “I was really overweight at the time and my hair was one of the only things I liked about myself.”

Although body changes — and the experience of having cancer — are different for each individual, body image concerns are a normal part of the cancer experience, says Michelle Cororve Fingeret, Ph.D., a psychologist and associate professor in the Department of Behavioral Science with joint appointments in the Departments of Plastic Surgery and Head and Neck Surgery at the University of Texas MD Anderson Cancer Center, and who also directs the MD Anderson Body Image Therapy Program.

“Every cancer patient will undergo some sort of change to their body image, whether the change is temporary or permanent,” Fingeret says, adding that the outward visibility of body changes isn’t as big a factor in how a patient feels about those changes as people might think. “The location and size of the disfigurement does not predict someone’s adjustment.”

HOW CANCER AND TREATMENT CAN CHANGE BODY IMAGE

All types of cancer and the treatments associated with them can affect patients’ bodies, as well as how they feel about their bodies. Cancers of the head, neck and face can cause permanent changes, such as jaw removal or removal of part of a person’s face, in areas that are highly visible to others. And while reconstruction is typically part of a treatment plan in such cases, these changes can be very upsetting, especially at first, says Maria Chi, M.S.W., LCSW-R, a licensed oncology social worker and social work internship program director with CancerCare, a national organization offering free professional support services for people with cancer and their loved ones.

Fingeret adds that viewing themselves in a mirror for the first time after surgery is often challenging for these patients. It's not just the extent of the changes that makes them hard to accept, but their suddenness. “Many patients are shocked when they see themselves after surgery,” she says.

Lymphedema can also cause body changes that might be visible to others, Chi says, depending on where lymph nodes are removed. “Fluid can build up and cause magnified swelling,” she says. “It can be hard to manage and very noticeable.”

In addition to surgical scars and loss of a part of the body, visible body changes during cancer and its treatment can include hair loss, gaining or losing weight, rashes or skin changes resulting from radiation or drugs, and the need for an ostomy (an opening created to allow body waste to exit into a bag).

While visible changes can be distressing to patients, just as upsetting can be changes that affect sexuality and intimacy, along with changes that affect a person’s identity or sense of self, says Chi. These can include early menopause for women, infertility, fatigue, loss of interest in sex, erectile difficulties and psychological changes such as fear, anger, sadness, hopelessness or anxiety.

“These types of changes can take a toll,” Chi says. “If you’re someone who is used to being energetic and performing at a high level, to have these limitations can make you ask, ‘Who am I?’”

Fingeret adds that body image issues can also result from a loss of function, such as for some patients with cancers of thehead and neck. “I’ve had patients who have lost the ability to speak or the ability to swallow,” she says. Changes in how the body functions can deeply affect a person’s body image, even though the changes might not always be visible to others.

FINDING A NEW NORMAL

Knowing that all people who undergo treatment for cancer will face some sort of changes to their bodies and self-perception is both normalizing and challenging — normalizing in that health care teams can help patients prepare to some degree, but challenging in that there is no one-size-fits-all approach to managing these changes. “Everyone is different,” says Carolyn Messner, D.S.W, M.S.W., OSW-C, FAPOS, LCSW-R, director of education and training for CancerCare. “Not everyone needs to seek treatment, but some people do. What works for one person might not work for another.”

In “Managing Body Image Difficulties of Adult Cancer Patients,” a 2013 article published in the journal Cancer, Drs. Fingeret, Irene Toe and Daniel E. Epner wrote, “At the beginning of a clinical encounter, providers should remind patients that body image difficulties are very common as a result of cancer and its treatment. Normalizing concerns in this way reduces shame, embarrassment, and stigma.”

Fingeret says that some of her work involves encouraging health care providers simply to have these conversations with their patients. “I encourage them to ask patients how they’re feeling about their appearance,” she says, adding that she also encourages patients to be open with their treatment teams about body image concerns. “This can be a big hurdle.

Patients feel guilty or ashamed for having these feelings. They feel like they’re not allowed to say how horrified they are by their scars. It can be empowering to say, ‘I’m struggling.’”

Walker says she remembers feeling like a “failure” for having a disease that caused her to lose her breast. She also felt guilty for expressing concerns about her changed body. “People said, ‘It’s just a breast; you didn’t lose a leg,’” she says, adding that she also faced unpleasant comments on social media about her lack of gratitude for her health when she complained about losing her hair.

Chi says she encourages people to recognize any change to their body’s appearance or function — whether others can see it or not — as a loss. “I tell them it’s understandable that it’s upsetting and it’s OK to grieve the change,” she says. “I try to help them identify and acknowledge those feelings.”

For those whose physical changes have left them unable to participate in activities they could do before having cancer, Chi encourages them to ask themselves how they can continue to play a role, even in a limited capacity. For example, a parent who doesn’t have the energy to attend a child’s school function can identify different ways to contribute to the event, such as organizing via email or making food. New activities, such as journaling and art, may also be productive as ways for survivors to come to terms with the changes they’ve experienced.

Ultimately, patients may find some peace by accepting their “new normal.” While there aren’t concrete stages that a person may go through in accepting body changes, Chi says that, for most people, the impact of these changes lessens over time. As temporary changes dissipate — hair begins to grow back, energy returns, weight lost is regained — many patients find themselves feeling more positive, she says.

Those whose changes are permanent, such as a lost limb or visible scar, may also find a level of comfort and acceptance by focusing on what they can control, Chi says. “It’s important to acknowledge that the change can be painful,” she says. “But by acknowledging, ‘this is how I look right now,’ and focusing on the outcome, such as what the treatment is for, patients can develop some perspective.”

Things like journaling, using positive self-talk and focusing on what’s meaningful in their lives can be helpful to some patients, Chi says. For Walker, what helped was noticing the other patients being treated at MD Anderson Cancer Center. “So many people come there to be treated,” she says. “My heart changed when I saw little babies.”

FINDING THE RIGHT SUPPORT

Walker says she chose to see a mental health counselor after breaking down in tears as a young doctor began drawing on her chest in preparation for radiation therapy — something that eased her distress when she realized her feelings about her changing body were normal. She also formed friendships with a few other women who were being treated at the hospital at the same time she was, for the same type of cancer.

Support groups — in-person, online or telephone-based — can be an important tool in addressing feelings about a changed body. “Talking with those who are struggling with similar issues can be very helpful, especially in the post-treatment phase, when people are more likely to be on their own,” Messner says. She suggests that patients speak to their health care teams or reach out to organizations such as CancerCare, the American Cancer Society, Cancer Support Community, the National Coalition for Cancer Survivorship or SHARE Cancer Support for information about support groups.

According to Fingeret, it’s important for patients to find the type of support that makes them feel comfortable. “Some people want counseling, while others prefer educational materials focused on self-help,” she says. For patients who have trouble with speaking, eating or swallowing — such as those who’ve had head or neck cancers — she recommends support groups through organizations such as the National Foundation of Swallowing Disorders (swallowingdisorderfoundation.com). Although concerns about body image are normal for all cancer patients, there are some signs that indicate a deeper struggle that could indicate the need for professional counseling. These include feeling sad all the time, feeling like you have no one to talk to, staying home, sleeping more than usual and feeling uncomfortable with looking in the mirror, Messner says.

According to Walker, it is possible to feel good again. Initially disqualified as a reconstructive surgery candidate because of her weight, she lost 140 pounds over two years through walking, dieting and working with a trainer. She says she “fought through” the weight gain from tamoxifen, which she currently takes, working “extra hard and extra hours” to lose the weight.

“I had to push through all that,” she says, adding that post-surgery, she feels good mentally and physically. “It was worth it.”