Body Image and Coping in Head and Neck Cancer

A cancer diagnosis and treatment almost always bring about changes to the physical, psychological, emotional, and spiritual sense of self. From hair loss due to chemotherapy and radiation to changes in sexual function to post-operative scars, the body is modified, sometimes permanently. These changes can be even more profound for patients with head and neck cancer because of their visibility.

Head and neck cancer surgery can cause great changes in facial appearance depending on the extent of surgery needed to remove the cancer. This can be particularly hard, as our face is the window to the rest of our being; our behavior, temperament, personality, and sense of just who we are. From eye-rolling to sticking out your tongue in disgust, to smiling-our face is a vehicle of emotion. It is often the first part of us seen and can leave a lasting impression.

Patients may also experience changes in their speech and need to learn new ways to communicate. Patients additionally may face not being able to eat “normal” food or “normally’ as they did before their cancer diagnosis and treatment. They may now rely on tube feedings to sustain themselves nutritionally.

When facial appearance, speech, and eating ability have changed as a result of cancer treatment, we must learn to adapt to our new appearance, as well as the reactions others may have to the change in our appearance, looks, smells, or sounds. In a culture obsessed with appearance and selfies, this is often easier said than done.

• Allow yourself to grieve for these changes to yourself. They aren’t just changes, they are losses. We need to take time to honor ourselves before cancer and to adjust to life after cancer. As important as time is to healing wounds, what we DO with that time is equally important. Taking time also puts you at risk of further social isolation. Try to find a balance between getting used to the changes you have experienced and venturing back out into the world.
• 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, provide 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 and can provide assistance if you are not able.
• Go to a support group with other head and neck cancer patients who are experiencing these challenges. 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 your different speech abilities, 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 may help you feel more assertive and confident in yourself, despite the outward changes to your appearance.

When someone asks about your facial scar, you could respond, “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?”

If you are invited to a holiday dinner party, but you are not able to eat any longer and use a feeding tube for your nutrition, let the host know in advance that it may be uncomfortable for you to sit at a table when everyone else is eating, but could you come later for some social time with friends where there doesn’t have to be an emphasis on you NOT eating like everyone else. Communicating your needs is of utmost importance

Once you have become more accustomed to your “new normal,” give back to others coping with head and neck cancers who could benefit from your experience and expertise in coping with changes in appearance. Peer support is empowering and helps to counter 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.