Mirror, mirror on the wall … Who is that?
Grimm later learned she’d need a double mastectomy, yet for a time it was the hair loss that bothered her most.
“If I passed my reflection, it was startling,” she says.
Grimm’s friend Patty Ellerby, also a survivor, was so apprehensive about changes to her appearance that she would not part with her wig even after it had begun to wear out.After chemotherapy, it is not uncommon for hair to grow back a different color and texture than it was before.
Cancer changes how patients feel and look, which can affect how they perceive their bodies and appearance. Physical changes are caused by the disease as well as its treatments; depending on the type of cancer, they can include surgical scars, hair loss from chemotherapy, weight loss or gain, facial disfigurement, loss of a body part or swollen limbs.
“It’s very hard for patients to prepare themselves even if they’re told what to expect,” says psychologist Michelle Cororve Fingeret, an assistant professor in the behavioral science department at the University of Texas MD Anderson Cancer Center in Houston.
Fingeret’s research reveals that body image concerns are prevalent among cancer patients; a sizable majority feels embarrassed about bodily changes at some point following diagnosis. Her findings led to the establishment of the Body Image Therapy Program at MD Anderson, where she helps cancer patients with various body image issues.
Body image is not just about how a person views his or her appearance, but it also includes the way a person feels about his or her entire body and the way it functions both inside and out, Fingeret says.
Cancer patients generally feel fatigued, and many lose interest in or are unable to have sex.These conditions often cause feelings of deficiency.And a diminished sex drive and certain surgeries can make a person feel less feminine or masculine, says Gloria Nelson, senior oncology social worker at the Montefiore Einstein Center for Cancer Care, New York.
Grimm’s double mastectomy and reconstructive surgery left her with significant scarring and no sensation in her breasts. Her hormone therapy suppresses her libido, and though her spouse is supportive, she sometimes fears her relationship will suffer.
“Here I am all chopped up and yucky and I have no sex drive whatsoever,” she says.
Grimm is reluctant to wear short sleeves because of lumpiness beneath her arms. But even changes that are not easily visible, such as the loss of a testicle or a hidden scar, can affect a person’s body image and cause feelings of insecurity. Some people imagine that others see them differently because they have cancer, even if they look the same, Nelson says.
Indeed, there can be a significant discrepancy between the way a patient views his or her body and how others perceive the patient.
Ellerby was self-conscious about her appearance simply because her looks had been altered, though not in any abnormal way. Some of her clothing did not complement her darker hair, so with a friend’s guidance she made some wardrobe changes.The friend told her she looked gorgeous, and meant it, but Ellerby wasn’t quite ready for her big reveal. First, she spent a Saturday running errands, sans wig, in a different part of town so as not to be recognized. By gauging strangers’ reactions, or non-reactions, Ellerby started to regain her confidence and feel comfortable in her own skin.
“Disfigurement is all in the eye of the beholder,” Fingeret says.
When body image issues arise,“It doesn’t matter what (a perceived defect) looks like to everyone else; it matters what it looks like to the patient,” she adds.“I can have someone with a tiny scar that’s barely noticeable but it bothers them a lot, and someone else will lose an eye and be just fine.”
Three years after completing her treatment, Grimm won’t allow her husband to touch her scars.“I wish I had at least talked with the doctors about whether they could have done a better job hiding them,” she says.
In some cases, such conversations may indeed bring about better results, says Dr. Philip Bonanno, director,The Breast Institute, Northern Westchester Hospital, Mount Kisco, N.Y.
Increasingly, patients are addressing issues of appearance at the onset of treatment, which suggests they are more confident they will survive and have a life after cancer.“From a patient’s perspective, they are now more concerned about the effects of the treatment of cancer than the cancer itself,” says Bonanno, adding that those concerns have given rise to “aesthetic oncology,” which combines the goals of cancer surgery and aesthetic surgery.
Because bodily changes are inevitable, it is recommended that patients talk with cancer survivors about how they coped. It is also advisable to be prepared for questions and comments and to rehearse some appropriate responses.
The national “Look Good…Feel Better” program provides cancer patients with skincare and makeover tips such as how to pencil in eyebrows.The Personal Care Products Council Foundation, along with the National Cosmetology Association and the American Cancer Society, sponsors the program.
Eating well, getting enough sleep and exercising tend to help patients look and feel better, Nelson says.
In addition, the American Cancer Society recommends keeping up regular grooming habits such as shaving and applying makeup, even when confined to bed.
A patient who loses or gains weight should get his or her clothes altered in order to feel comfortable and perhaps less conspicuous, the society suggests.
When concerns about physical appearance become overwhelming or interfere with normal activities, a patient should consider speaking with a counselor.
Grimm regained confidence by sharing her concerns with family and friends, who were reassuring.“You have this idea in your head how horrible you look,” she says,“and they can reverse that.”