Evan Graboyes MD, Stacey Maurer PhD, Katherine Sterba PhD, MPH

What is it?

Head and neck cancers impact a highly visible and noticeable area of the body. It is common for survivors to experience changes in body image, or the way that one views themselves. Physical changes after treatment can lead to impaired smiling, swallowing, and speaking which can contribute to concerns about body image. These concerns may be mild or severe; however, these negative perceptions about appearance and/or head and neck-related function and can be associated with depression, isolation, and decreased quality of life.

How common is it among head and neck cancer patients?

Precise estimates of body image concerns in head and neck cancer survivors are not known, however up to 75% of head and neck cancer patients report concerns about body image before and/or after treatment. The importance of body image and its perception varies from one patient to another. The risk of body image concerns is highest in those who have recently finished treatment, although some head and neck cancer survivors may experience body image concerns that last much longer. It is not currently known how body image concerns change over time in long-term head and neck cancer survivors. While most concerns during and immediately after treatment are usually related to survival and function, body image disturbance may play a more significant role in long term survivors and can significantly impact their quality of life. Females, younger patients, patients with depression before cancer, patients undergoing more extensive surgery, and patients with difficulties speaking or swallowing after treatment may be at higher risk of experiencing body image concerns.

What are the signs/symptoms?

Signs and symptoms may vary between patients, but generally include concerns about appearance and distress with head and neck-related function. Appearance concerns may result in personal dissatisfaction with appearance (being self-conscious or embarrassed about the way you look), worry about how others perceive your appearance (getting upset when others make comments about the way you look), or attempts to conceal signs of your head and neck cancer (covering your neck with a scarf). Functional impairments may include embarrassment about eating in front of others, concerns about drooling, or frustration that others cannot understand what you are saying. Body image concerns can lead to patients becoming isolated and avoiding social situations such as going to church, the grocery store, or seeing friends and family. They may also impact the ability to return to work and subsequent financial distress experienced by head and neck cancer survivors.

How is it diagnosed?

Your medical providers may ask questions to help identify your specific body image concerns. Your providers may also use questionnaires which ask about common body image concerns of patients with head and neck cancer. Because body image concerns are highly personal, it is important that you share your experience with your medical team. Objective measures of disfigurement may not be effective in understanding your experience. Formal evaluation by a trained psychologist or psychiatrist may also be helpful to make the diagnosis.

How is it treated?

Many treatments to address body image concerns in head and neck cancer survivors are currently being studied. There is some evidence that cognitive behavioral therapy, delivered by a trained psychologist or counselor, may be effective. Other studies examining ways to cover or hide affected areas of the head and neck have not been shown to be effective. Management may involve referral to other members of your head and neck cancer care team with expertise in evaluating and treating body image concerns. Optimizing function with speech therapy and physical therapy may also impact the perception of body image. Additional reconstructive surgery may be possible and may have a major impact on body image. It is very important that you discuss this with your team of providers. Participation in national head and neck cancer survivorship or support groups may also be an important part of treatment for some patients.

When should I call my doctor?

If you have been experiencing some of the symptoms listed (or experiencing similar types of concerns), you should talk to your healthcare provider and ask for help. If you are unsure, talk to your healthcare team as they may be able to provide you with additional information about how to manage these concerns. They may be able to identify whether body image concerns from head and neck cancer are affecting you, make the appropriate referrals, and offer treatment if necessary.

NEED URGENT HELP? If you have feelings of harming yourself or others, or if you need immediate help, please call 911, or call the National Suicide Prevention Lifeline at: 1-800-273-TALK (8255) or www.suicidepreventionlifeline.org

Where can I learn more?

https://headandneckcancerguide.org/adults/the-emotional-journey/living-with-a-disfigurement/

https://www.cancer.gov/about-cancer/coping/self-image

https://www.livestrong.org/we-can-help/emotional-and-physical-effects-of-treatment/body-image