Living with Head and Neck Cancer

By Andrew Terrell, MD Apr 10, 2017

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A cancer diagnosis often changes a person’s sense of self. There’s a feeling of losing control as the life the patient knew changes, as do the lives of the people they love and care for.
Head and neck cancer patients are especially susceptible to dramatic changes in perceptions of self. Mental health is a crucial part of dealing with the disease — where up to half of patients are affected by depression at some point — which is believed to have the highest rate of suicide of any cancer diagnosis.

Symptoms and diagnosis

For head and neck cancer patients, symptoms often start very generally and very commonly: a sore throat, ear pain, hoarseness and trouble swallowing are common initial symptoms. Taken individually, the symptoms could be associated with many different ailments. When combined, the situation gets more concerning. The commonness of the symptoms can lead to delayed diagnosis as patients can be treated with multiple rounds of antibiotics or steroids before being referred to a specialist.
During this time, most patients know that something’s not right. In the back of their mind they may not know what’s wrong, but they know something’s wrong. Some are even reluctant to come to the doctor when they do recognize something is very wrong. They’re reluctant because, it’s not cancer until the doctor says, ‘It’s cancer.’
Diagnosis is a pivotal moment in a patient’s life, associated with strong emotions and anxieties. What’s more, initial diagnosis is not a one-day event, usually there is an extended period involving testing and biopsies before having a definitive answer. Anxiety can be compounded during this time. And, as providers, we know that our patients are people, with all these variables going on in their world that we are unaware of. We all bring our ‘baggage’ with us. All patients have their own, different situations — social, financial, educational.

Treatment

Anxiety grows during the work-up period before treatment. Suddenly a person is thrust into the health care system. There are scans and procedures to be performed in the office as treatment options are considered.
For head and neck cancer, the most effective treatments tend to be surgery or radiation. Patients generally know what to expect from surgery. With radiation, patients know less what to expect. Every treatment has its benefits and its side effects. Surgery can bring initial pain with a dramatic change, tending to improve over time. When talking about surgery, we should address a particular term associated with head and neck cancer treatment: disfiguring surgery. Words are important to health care providers and our patients. Words matter. The words we use affect the way our patients think about things. It’s not a disfiguring surgery, it’s a disfiguring cancer. Putting the blame where it belongs, on the disease — not on the patient, not on the surgery, not on the surgeon — helps our patients psychologically.
Radiation requires daily appointments over a six to seven week course. Radiation can bring a sense of loss of control. Patients are strapped down and told what to do.

Survivorship

We’re changing our thinking when it comes to survivorship. Survivorship starts with diagnosis. We’re looking at the whole person, getting more in-depth to treat the whole patient. Our patients will change. It is different for every patient, but on average a patient will look to have aged about 10 years after treatment. Some will return to normal activities without significant side effects. Others will experience profound life changes in terms of loss of career and sense of self. Who they were before is not who they are after.

We take a multidisciplinary approach working with speech, occupational and physical therapists. Extensive rehabilitation is often required, including:

  • Facial reconstruction
  • Mental health
  • Speech therapy for swallowing rehabilitation and articulation issues
  • Substance abuse control

Cancers of the head and neck can be among the most psychologically traumatic to experience, given the importance of the head and neck in appearance and the visibility of the disease and its treatment. This leads to the high rate of depression and suicide. As providers we learn that everyone has different priorities. It’s not always wanting to live the longest amount of time possible. Sometimes the highest priority is decreasing pain. Sometimes it’s normal functioning. Sometimes it’s appearance. Recently I was treating a 90-year-old and told her treatment would involve resection of her palette. I told her she would no longer be able to wear her dentures. That was a game-changer. She wouldn’t do it because her appearance was important. She was 90 and that was probably reasonable for her situation. That’s where she was. Everyone has different priorities and different issues they are dealing with.

Living with head and neck cancer

Nearly all cancer patients have a fear of recurrence, some to greater and lesser degrees. There’s uncertainly — uncertainty about living with the disease and the future. There’s waiting. There’s vacillation between hope and despair, depending on the day and the information they receive on that day.

And at what point in time do we tell our patients, ‘You’re cured’? In the literature, it’s five years, but really that’s not much more than a random period of time chosen.

It comes down to a disruption to daily life with the feelings of loss of control, fear and anxiety. Patients had been living their lives, going to work, spending time with their family. Suddenly, they are in the health care system, going to appointments. Something as fundamental as eating becomes a chore. There are functional aspects to treatment — breathing, swallowing, communicating are potentially affected by treatment. This loss of control affects the sense of self, self-confidence, self-esteem, self-image, not feeling like the person they once were. Most patients get back close to ‘baseline,’ but not completely to who they were before. It’s close, but it’s just different. Even interactions with health care providers can affect self-confidence. Patients can feel like they waited too long to get checked out. There can be a feeling of bringing this cancer on themselves. That sort of mentality can affect our interactions and the way patients perceive themselves. This state is usually temporary, but can persist for some patients.

The human mind is programmed to ask, ‘Why?’ Patients try to make sense of their experience, why this is happening to them and their family. They reassess priorities — things that had been important in the past may become less so. Family and social support systems often become increasingly important. Perspective and priorities change. For some, just living becomes important. In sharing the burden of cancer, patients can develop supportive connections with family, friends and a wider social network that includes health care and social service providers. Significant support can be found in other patients with head and neck cancer. In accepting the alternation of life, patients can find the hidden benefits therein. This can mean using the experience to grow as a person. A lot of times patients develop a new perspective that helps them move on and move forward.

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