Body image and breast cancer: Tips and truths

Among the many concerns you may have after a diagnosis of breast cancer is the emotional impact of your changing body. Body image, what you think of your physical self and how you think others see your body, may play a role in your everyday emotional wellness. For some women, a changing body image has a strong effect on coping with breast cancer in the long-term.

“The weight I’ve gained since my diagnosis affects every aspect of my life, from my emotional and physical health to my intimacy,” shares Serenity Kisling, of Boulder, Colo.

Serenity, now 40 years old, has estrogen receptor-positive stage IV breast cancer. Her treatment included a double mastectomy and bilateral salpingo oophorectomy, surgery to remove the ovaries and fallopian tubes. She also takes the medicine anastrozole (Arimidex), an aromatase inhibitor.

Both the surgery and aromatase inhibitors are methods of stopping the body from making the estrogen needed for ER-positive breast cancer to continue growing. But stopping estrogen production can lead to physical changes, including weight gain.

“I’m usually a very positive person, but I have to say, if there’s anything about the cancer that I resent, it’s this weight gain,” she says.

Many women share Serenity’s experience, but it is possible to feel good about your body again.

Relating to Your Changing Body

Chemotherapy, hormonal therapy, surgery, and radiation therapy — standard treatments for most breast cancers — all have physical side effects that can visibly change your body. Scarring, lymphedema, weight gain or loss, hair loss, breast removal, and skin changes are some of the most common. Others, including hot flashes related to early menopause or fatigue that prevents you from being as active as you were before breast cancer, can leave you feeling less confident or in control of your body.

Though these side effects are common, you might be surprised when they arise. You may feel unprepared to deal with emotional reactions to these changes.

Anne Katz, RN, PhD, clinical nurse specialist and sexuality counselor at CancerCare Manitoba, says body image concerns surprise women because the first priority after diagnosis is treating the cancer medically.

“Women make their treatment decisions under duress,” Dr. Katz says. “Choosing whether to get a bilateral mastectomy or single mastectomy, for example, requires concentration and rationality, and in the trauma of diagnosis, you often just can’t have these.”

A woman who has cancer in one breast may choose to have both removed to avoid a cancer in the healthy breast in the future, she explains, without thinking about what it means for body image or sexuality.

“It’s not uncommon for women to discover afterward that their breasts were major sources of pleasure. There can be negative feelings because they believe they’ve significantly altered their own ability to be aroused,” Dr. Katz explains.

But body image isn’t just about how you react to the loss of or changes to your breasts, your hair, or your physical strength. It’s also about how you perceive that your loved ones and strangers view you and your altered body. In our society, a woman’s femininity, sexiness and womanhood are often equated with looks. Even in the absence of physical changes from breast cancer and its treatment, body image concerns are widespread.

“Women come to me with concerns already set within the context of most of us not liking our bodies anyway. Body image isn’t always about being ‘heavy’ or ‘fat,’” says Dr. Katz. “In some cases, ‘skinny’ is wrong. Many women come in with bad body image to begin with.”

It’s also true that you could love your body before diagnosis and develop low self-esteem after treatment. Yet, not everyone reacts negatively to an altered body. Your response to change comes from your individual perspective, which is shaped by past experiences, personality and, sometimes, by support from family and friends. These changes could feel different, depending on your age and relationship status. Whether your breasts or hair are important to you and whether you see your scars as unwanted marks or as signs of your strength is unique to you.

Relating to Yourself and Others

Jennifer Pellechio-Lukowiak, 45, of Monmouth County, N.J., wasn’t bothered by the way her breast looked after her lumpectomy, and chemotherapy didn’t impact her body image.

It wasn’t until she finished her course of radiation therapy that she noticed a difference.

Jennifer’s breast shrank nearly two cup sizes, and the scar from her lumpectomy sunk in, making it more visible than it was right after surgery.

“We sometimes do a poor job of warning women about certain changes, like the skin effects of radiation or the disfigurement of lumpectomy,” Dr. Katz says. “The way a scar looks immediately after surgery sets the stage for how a woman sees it for a while. She may not realize that that big red line will become a thin, white line eventually.”

Even though providers often talk about the physical changes that can result from surgery and medical treatment, it can sometimes be difficult to think about them during the stress of a new diagnosis. This, coupled with some providers avoiding sensitive topics — like the loss of pubic hair from some chemotherapies — creates an atmosphere for unexpected negative reactions.

When Jennifer started to feel self-conscious about the way her breast looked and because it felt numb, she saw a plastic surgeon about reconstruction. Her doctor felt her skin was too damaged from treatment to safely allow an implant to be inserted.

“For 5 years, my breast was a constant reminder of being sick, and that’s taxing after a while,” Jennifer says.

Her husband was very supportive and reminded her that, for him, the look of her breast wasn’t significant. He chose to concentrate on the fact that Jennifer was alive and out of treatment. Even with this support, she struggled.

“It was hard to explain that while I understood it didn’t bother him, it really bothered me,” she says.

When considering treatments that may cause body image concerns later, especially surgery, Dr. Katz advises: “This is your body, and you get to say who does what to it as long as you are fully informed about your treatment options. Don’t rush into anything.”

Even when your partner doesn’t mind the way your breast looks or feels, it’s important to consider what matters to you. If you’re single, how you see your breasts after surgery could have a strong impact on how confident you feel in future relationships, both physically and emotionally. Whatever your situation, if reconstructing your breasts is important to you, it’s worthwhile to seek second or third opinions.

Diane Grayson, 57, of Bellevue, Wash., had two lumpectomies, a mastectomy and reconstruction with a saline implant that later needed to be removed. She worried about how the changes to her body were affecting her intimate relationship with her husband.

“He would tell me to do whatever made me happy,” Diane says. “But I wanted to make him happy, too. In the end, though, you should be true to your own feelings and try to focus on yourself, what you need.”

The challenge has been in deciding on a next step. “I don’t have the same feeling of wholeness or sexiness I had before. What I really want is to be able to accept my body and what happened to me, to feel comfortable enough to move forward [with the possibility of another reconstruction],” Diane says.

What Can I Do?

Some women come to embrace their changed bodies. Learning to love and accept the body you have and to forgive it for what might feel like a betrayal may be difficult, but it can be done.

Dr. Katz offers a few simple ways to start:

• Give yourself time to grieve the loss of your breasts, hair, or physical ability before you decide what to do next.
• Wear things that make you comfortable. If you wore “sexy” underwear before, continue. If you feel your best in a t-shirt, wear one.
• Find clothes you’re comfortable having your partner see you in. Being naked with your partner can be pleasurable, but if you want to cover up more than usual, that’s OK.
• If you’ve had reconstruction, consider nipple or areola tattoos, if that is important to you.
• Eat healthy and limit alcohol. A good diet can help you maintain weight and make you feel well physically and emotionally. If you need help, consider talking with a nutritionist about your unique situation.
• If you have a partner, talk about how you feel. Open communication is one of the best ways to actively cope with challenges in relationships, and though it may be uncomfortable to bring up sex, talking now sets the stage for later.
• If you’re single or dating casually, take as much time as you need to start a physical relationship. You may find yourself wondering if negative experiences are caused by a lack of connection or by your partner’s feelings about your body or the cancer. Who you choose to share your body with is your decision.
• Find a support group, or seek professional counseling. Sometimes all it takes is extra understanding from people who’ve been there or who know what to say or ask.

It may be that you come through treatment and see your changed body as a reminder of all you’ve been through and the challenges you’ve faced. Kellie Green, 53, of Warner Robins, Ga., who found a lump through a breast self exam she did while lying on her side, had this experience after being treated for stage III triple-negative breast cancer in 2008.

“I never thought about reconstruction, I just wanted the cancer to be gone,” says Kellie. “It took me 2 weeks to look at myself after surgery, and at the time it didn’t look too bad. A few weeks later I saw myself in the bathroom mirror, just as I was passing by it. My shirt was unbuttoned halfway and I just thought ‘Wow, I am so sexy right now.’”

Kellie had both breasts removed in separate surgeries, chemotherapy and radiation. After her treatment, she started telling herself she was beautiful, went back to working out regularly, and experimented with tops that accentuated her chest. How she came to see her body so positively she can’t quite say.

“It just kicked in for me. Beauty is not all about the breasts. We’re all beautifully made,” Kellie says. “We’re not ugly. Cancer is ugly.”