Body Image and Coping in Head and Neck Cancer

Author: OncoLink Team
Last Reviewed: January 3, 2019

A cancer diagnosis and treatment almost always brings 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 to 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 that is obsessed with appearance and selfies, this is often easier said than done. 

  • First, it is important that you allow yourself to grieve for these changes to your self. They aren’t just changes, they are losses. We need to take time to honor our selves 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 for further social isolation. Try to find a balance with getting used to the changes you have experienced and venturing back out into the world.
  • Second, 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 difficult 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. You can also attend a Look Good Feel Better program (for both men and women) to learn how to utilize cosmetics from experienced cosmetology professionals.
  • Third, attend 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.
  • Finally, 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 speech printed on a card you can hand to someone.
    • Preparation for public events with help you feel more assertive and confident in your self, despite the outward changes to your appearance.
    • When some asks about your facial scar, you could respond, “thanks for asking, I know if 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?”
    • Perhaps 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 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 approaches. While it may be easier to retreat within, it is so important not to isolate yourself.

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