Before Head and Neck Cancer Treatment, I Wish I'd Known...

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Michael D. Becker

When faced with a diagnosis of head and neck cancer, a group of diverse tumor types that usually begin in the squamous cells that line the moist surfaces inside the head and neck, it can be difficult to know what to expect before starting treatment. Whether you are considering surgery, radiation, chemotherapy, targeted therapy, or a combination of cancer treatments, here are 10 tips to help you prepare based on my personal experience.

Daniel Sone/National Cancer Institute

Always get a second opinion

Before committing to a treatment, seek opinions from doctors who specialize in head and neck cancer. Include at least one large hospital or established cancer center with multidisciplinary teams. This means the team should include a surgeon, radiation oncologist, medical oncologist, radiologist, pathologist, dentist, speech language therapist, nutritionist, and nurses. Having this kind of team has become more and more important in treating these complex and diverse tumors in an effective, timely, and evidence-based manner.

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Bulk up first

Most treatments for head and neck cancer can negatively impact both your desire and ability to consume food, so don’t skimp on meals between the time you are diagnosed and starting treatment. Common side effects can include change in or loss of taste, mouth sores, dry mouth, pain, fatigue, nausea, and vomiting, which can worsen malnutrition. I was told to gain 10 pounds before treatment but ended up losing 50 pounds over six months, going from a high of 205 to a low of 155 pounds.

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Practice good oral hygiene

Oral complications occur in nearly all patients receiving radiation for head and neck cancer and include mouth sores, infections, saliva change, fibrosis, sensory problems, cavities, periodontal disease, and bone death. Some complications occur only during treatment; others, such as dry mouth, may persist for years. Preventing and controlling these problems by practicing good oral hygiene can help you continue cancer treatment and have a better quality of life.

Sharon Mastrosimone Photography

Accept help early and often

Both the disease and treatments affect your mind and body. Accept that you will need physical and emotional support from others to get through cancer. Family, friends, and neighbors can help prepare meals, provide transportation to and from medical appointments, and run errands. Many studies show that cancer survivors who have strong emotional support tend to adjust better to cancer-related life changes, have a more positive outlook, and report a better quality of life.

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Consider complementary therapy

Acupuncture, an ancient medical treatment originating in China, is gaining momentum and acceptance as a valid treatment in medical practice. In fact, it is one of the most widely accepted alternative and complementary therapies in use today. It is used to treat many illnesses and ailments and in cancer patients. Those with cancer use it to control pain and relieve nausea and vomiting, fatigue, hot flashes, dry mouth, neuropathy, anxiety, depression, and sleeping problems.

Michael D. Becker

Treatment is time-consuming and boring

Time sure can pass slowly during treatment and between appointments unless you have something to do. Books can be a great way to escape. Personally, I found that writing can be very therapeutic and always brought my laptop computer with me to the chemotherapy suite. Consider starting a blog, which can be a good way to keep family and friends updated or simply serve as an outlet for venting your feelings. Additionally, bring along some music and headphones to soothe and distract you.

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Look to other people with cancer

People with cancer often feel lonely or distant from others. It may be that you feel isolated because you don't have anyone that you feel “just gets it.” Some patients report hiding illness-related fears from others to protect them, which decreased social connection. I found it helpful to talk to other people who have head and neck cancer. You can meet other cancer patients in your cancer treatment center, by joining a support group, or through a number of online communities.

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Be informed

Cancer is still widely misunderstood, with fears about treatment based on stories, rumors, or wrong information. But people feel better when they learn the facts. They feel less afraid and know what to expect. Ask questions, learn about your cancer, and be an active participant in your care. Some studies suggest that being well-informed about your illness and treatment makes you more likely to follow your treatment plans and recover from cancer faster.

Michael D. Becker

A unique fatigue

I only wish that I was better prepared for the common and debilitating fatigue that comes with cancer treatment, called cancer-related fatigue (CRF), which is different from the fatigue of daily life. CRF is defined as the feeling of unusual exhaustion associated with a high level of distress, disproportionate to the person’s activity, and not relieved by sleep or rest. It can last from months to years and often continues after treatment ends. The exact reason for cancer fatigue is unknown.

Michael D. Becker

Be flexible

When it comes to treatment and other medical appointments, it's important to be patient and flexible. Your scheduled appointments may run late by an hour or more. This can be due to other patients being late, medical emergencies, or a patient bringing up a complex medical issue at the end of their appointment. Most doctors take the time they need to provide proper, thorough care — even if it means pushing back a few appointments. Just be ready, and try not get upset by the changes.