Body Image and Coping in Head and Neck Cancer

Cancer diagnosis and treatment can impact your physical, psychological, emotional, and spiritual health. These changes can have even more of an effect if you have head and neck cancer because of the physical and functional changes you may have. 

Possible Physical and Functional Changes from Head and Neck Cancer Treatment

Head and neck cancer surgery can cause a lot of changes in facial appearance based on the type of surgery used to remove the cancer. This can be hard because our face is a defining physical feature often associated with our personality. From eye-rolling to sticking out your tongue in disgust, to smiling, your face helps you show emotion and different aspects of your personality. It is often the first part of you someone sees and can leave a lasting impression.

You may also notice changes in your speech and mouth function and may need to learn new ways to communicate and eat. For example, you may need assistive communication devices or need to rely on a feeding tube for nutrients. 

Coping with Changes from Head and Neck Cancer Treatment 

If you have changes in your appearance, speech, or eating from cancer treatment, you will need to learn how to adapt to these new physical or functional changes as well as to the reactions of others.

• Allow yourself time and permission to grieve any losses you experience. It is okay to be sad or disappointed about the changes. Try to find a balance between getting used to the changes and putting yourself back out into the world. Grieving has no timeline, but if it leads to isolation, that can cause more harm than good.
• Try to become comfortable in your own (new) skin. Learn how to care for your surgical scars, manage your feeding tube, and try new ways to communicate that work for you. It may be hard to look at yourself in the mirror, carry out routine oral care, or put on cosmetics. Share your feelings with caregivers and support persons and ask for help. It’s important to have a care partner who is skilled in your specific care needs who can help you if needed. 
• Seek out support. Talk with a social worker, therapist, your care team, or go to a support group with other head and neck cancer patients. There is strength in numbers and growth in connection. SPOHNC (Support for People with Head and Neck Cancer) has organized 125 chapters nationwide offering support groups, peer connection, and resource sharing. CancerCare also offers an online support group for patients with head and neck cancer.
• Prepare your “elevator speech.” This is the speech you give when someone asks you about the changes to your appearance, your speech, or your eating habits. Practice your speech with supportive caregivers and family members. If you are not able to speak or are concerned about people understanding you, have your elevator speech printed on a card you can hand to someone or ask for an occupational therapy referral to help with other adaptive communication devices and tools. 

Being prepared can help build confidence and may help you feel more ready to face social situations, despite the outward changes to how you look.

When someone asks about your facial scar, be honest with them. Saying something like this, but in your own words, may help you feel prepared and empowered: “Thanks for asking, I know it may make you uncomfortable, I’m still getting used to it myself. I had surgery to remove cancer. It is a challenge to go through this. Despite the change to my face, I’m still me. I still want to spend time with you, laugh, tell stories, and be happy. How can we work together so that we are both comfortable?” 

Ask for what you need. For example, if you now use a feeding tube for your nutrition and are invited to share a meal with others, talk to the host in advance. Talk about how you would like to participate, joining for the seated meal if you are comfortable doing so, or maybe coming before or after dinner for social time with friends where there doesn’t have to be a focus on you not eating like everyone else.

Once you are more comfortable with your “new normal,” consider giving back to others coping with head and neck cancers who could benefit from your experience and expertise in coping with similar changes. Peer support is empowering and helps with isolation, distress, and sadness.

There is no one-size-fits-all approach to coping with these changes. Do what works for you, which may mean trying different methods.