Heads Up: Head and Neck Cancer Patients and Their Caregivers

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By April Greene, L.C.S.W. and Alicia Rubel, L.C.S.W., Department of Social Work

A cancer diagnosis forces unexpected change in every patient. Especially in the case of head and neck cancers, because the treatments often result in somewhat permanent changes to patients' physical appearance. This can have an effect on their emotional well-being and overall self-perception.  

There's a period of adjustment to these changes for head and neck cancer patients, as well as for their caregivers, friends and families. But, there are strategies to help them cope.

Be patient

Patients: If your treatment resulted in noticeable scarring or disfigurement, remember that it's normal to have concerns and fears about changes in your appearance. You may feel as though others are staring, but in time people will get used to your new appearance.

Caregivers: If loved ones have undergone treatment that resulted in noticeable scarring or disfigurement, allow them some time to adjust to their new appearance. You may find they're hesitant to go out in public or be as social as they once were. In time, they'll regain confidence and resume a lot of their activities. Be patient with yourself, too. You might find that it takes you some time to adjust to their new appearance, and that's OK.

Develop a support network
Patients: Friends and family can be a wonderful resource during the cancer experience. Although it can be hard at times, try to be open to accepting help. If there's something you know they can do to help, don't be afraid to ask. It can also be helpful to connect with other patients who have undergone the same type of treatment.

Caregivers: There's a great deal of attention on the patient right now, but it's important to have friends and family to help you as well. Talk with other caregivers who share similar experiences. Ask friends and family to help with some of your new-found responsibilities. It's a great way to get small breaks.

Be active
Patients: Patients with a head and neck cancer undergo chemotherapy, surgery, radiation or a combination of treatments. Radiation and chemotherapy can cause fatigue. It's important to acknowledge when you are tired and get plenty of rest. However, going for walks and remaining active, as tolerated and approved by your physician, is a great way to increase energy and mood.

Caregivers: Caregiving can be stressful. Exercise and activity will help manage stress. Although it may be difficult to find time to exercise, it's important to engage in activities that contribute to your well-being.  

Do things you enjoy

Patients: Having a head and neck cancer diagnosis doesn't mean you have to give up all of your favorite pastimes. Try to do things you enjoy. Consider going to a movie or sporting event. If you're still adjusting to your new appearance or feeling fatigued, try indoor activities such as board games, painting or reading.

Caregivers: You will most likely spend a lot of time taking care of your loved one. However, it's important to take a break and do things you enjoy. Consider reading, painting, gardening, playing golf or going to a sporting event. It's also good to include your loved one in some of the fun. It will help keep him from isolating himself, and give you an opportunity to enjoy each other outside of the caregiving role.

Do things that make you feel good

Patients: Going through cancer treatment can lead to melancholic feelings. If you've gone through a treatment that has changed your appearance, it might be nice to treat yourself to something that helps you feel special, like a haircut or flowers. You might even consider wearing your favorite outfit, shoes, hat or accessory.

: Caregiving can be tiring. It's probably a good idea to treat yourself to something that helps you feel special as well, such as a massage, good meal or a long bath.

Face yourself
Patients: Our self concept is tied to our facial appearance, and when that appearance changes it's possible to feel like you're not yourself. If your treatment resulted in noticeable scarring or disfigurement, it's important not to avoid looking at yourself. It may be alarming at first, however, over time the shock will subside. Take some time to look at yourself in the mirror and don't be afraid of the emotions that come with it.

Caregivers: If your loved one has undergone treatment that resulted in noticeable scarring or disfigurement, try not to avoid looking at him. He will notice if you no longer make eye contact or look at his face. It will mean a lot to him if you can acknowledge that he looks different, but continue to interact in the same ways you did before treatment.

At MD Anderson there are a number of supportive services offered to patients and their caregivers, such as counseling, one-on-one peer support, support groups and more. For further information about any of these programs, contact the Department of Social Work at 713-792-6195.

We also are interested to find out from patients and caregivers who have experienced head and neck cancers which type of support would be most helpful. This information will help us plan for additional support services.  Please feel free to give more than one answer if there are multiple ways you would find helpful.

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