Cure is Not Enough: Why Survivorship Matters for Head and Neck Cancer Patients

Liza Murray, APRN & Allen M. Chen, MD

What is cancer survivorship?

Survivorship focuses on the health and life of a person with cancer from initiation of treatment until the end of life. It covers the physical, psychosocial and economic issues of cancer, beyond the diagnosis and treatment phases. Survivorship encompasses considerations related to the ability to obtain health care and follow-up treatment, late side effects of treatment, second cancers, lifestyle factors and quality of life. Both patients and providers alike play equal roles in the survivorship process. Family members, friends and other sources of social support are also considered part of the survivorship experience.

Why is survivorship important for head and neck cancer?

Survivorship begins at diagnosis. Survivor-ship is living with, through and beyond cancer and its treatment. Adjusting to a “new normal” and learning to cope with an umbrella of physical and emotional changes after cancer treatment is essentially what defines survivorship. This is particularly important in the setting of head and neck cancer due to the spectrum of physical and psychosocial changes that frequently accompany the diagnosis and treatment of these malignancies. Since patients with head and neck cancer are often treated with a combination of surgery, chemotherapy, and/or radiation therapy, the functional and quality of life implications associated with these modalities must be considered.

There is a need for patients to be educated regarding the long-term and late effects of cancer, interventions available to them to prevent or treat these problems, as well as ways to stay as healthy as possible after treatment. Survivors may be cancer free but the treatment can cause long term and late side effects that in some cases might be worse than the actual cancer treatment itself.

New Commission on Cancer Accredi-tation Standards require survivorship care plans be given to and discussed with patients treated with curative intent who are finishing active treatment and patients to be screened for distress and psychosocial health needs. As a result, these practices are becoming the standard of care.

What does a “new normal” mean after cancer treatment?

The end of cancer treatment, while a time to celebrate, can often represent a challenging time for patients. This is largely because of fears regarding the unknown. Given how life changing treatment can be, transitioning to a “new normal” takes adjustment and involves both physical and emotional considerations. For head and neck cancer patients in particular, this “new normal” may include changes in the way one eats and the activities in which one can participate; new or different forms of social support; cosmetic and/or physical changes on the body; emotional scars from having recently undergone such an intense experience. In addition, learning how to cope with natural fears of recurrence can take time.

How can one cope with fear of recurrence?

Fear of recurrence is normal and often lessens over time. However, even years after treatment, some events may cause patients to become worried. Follow-up visits, certain symptoms, the illness of a loved one, or the anniversary of the date one was diagnosed can all trigger concern. An important step patients can take is to be informed. Even though you can’t control whether or not your cancer recurs, there are steps one can take to help cope with fears and to provide a greater sense of control: Find out about support/health care services available to you; communicate pro-actively with your health care team; keep notes on any symptoms you may have; make sure you maintain and comply with a follow-up care plan.

What are some late physical effects from head and neck cancer treatment that influence survivorship?

Musculoskeletal/Neuromuscular Dysfunction
Damage to the spinal accessory nerve can be a major cause of shoulder dysfunction and pain in survivors, especially among those who underwent neck dissection. Referral to rehabilitation specialists such as a physical therapist to strengthen the affected shoulder and improve or maintain range of motion is one intervention. Additionally, there is nerve stabilizing medication for pain and spasm management. Survivors may also develop cervical dystonia which affects the muscles of the neck and upper back. Cervical dystonia can results from neck dissection that disrupts the cervical anatomy and damage nerve roots. Survivors who underwent radiation can also develop fibrosis in the neck causing pain and range of motion limitations as well as neuropathies leading to numbness, tingling and weakness involving the upper extremities.

Trismus is the inability to fully open the mouth. This is a common complication of treatment and has a detrimental impact on quality of life. This can cause difficulty with eating, speaking and maintaining oral hygiene. Physical therapy and jaw motion stretching exercises are interventions that could potentially help with this symptom.

Dysphagia/Difficulty Swallowing
Difficulty swallowing is most commonly characterized by inefficiency moving solid food through the mouth down the throat. This can result in aspiration. Patients should also be aware of a high risk of subclinical “silent” aspiration. This can be assessed by video fluoroscopic swallow study also known as the modified barium swallow or the fiber optic endoscopic evaluation of swallow. Aspiration is an independent predictor of pneumonia in cancer survivors and can be lessened by a speech language pathology referral.

It is recommended that head and neck cancer survivors be aware of the potential to develop worsening reflux disease. Proton pump inhibitors or antacids, sleeping with a wedge pillow, and not eating or drinking fluids for 3 hours before bedtime, tobacco cessation, and avoidance of alcohol are ways to control symptoms. Chronic reflux can injure the teeth by damaging the enamel and/or even lead to permanent damage to the esophagus.

Secondary lymphedema is a common late effect of treatment which causes swelling around face, neck, or internally around the throat. Swelling can have cosmetic and psychosocial consequences and can cause pain, infections, breathing or swallowing difficulties. Use of compression garments is one intervention that could improve this late effect.

Decreased energy is common among survivors who have undergone head and neck cancer treatment. This can interfere with quality of life. A regular exercise regimen can help survivors reduce fatigue, feel better physically and emotionally and generally cope better with related symptoms. Cognitive behavior therapy additionally lessens fatigue. Head and neck cancer survivors should be regularly screened for biological causes of fatigue including anemia, hormonal dysfunction, and cardiac dysfunction.

The thyroid gland is exquisitely sensitive to the effects of therapeutic radiation and is also known to naturally decline in function over time. It is recommended that patients who received radiation to the neck have their thyroid function checked with labs on a regular basis after treatment. Common side effects of hypothyroidism include fatigue, weight fluctuations, sensitivity to hot or cold, mood changes, and impaired concentration, among others.

Xerostomia (Dry mouth)
While some salivary gland tissue can be spared with newer techniques, dry mouth complications should still be expected. Dry mouth can be transient or permanent. Saliva changes compromise protective features and can result in increased incidence of dental caries, sensitivity of non-decayed teeth, attrition, erosion of dentition, mucosal injury, altered taste, inability to wear dental prostheses, and increase risk of oral infection. Alcohol-free mouth rinses are recommended for head and neck survivors. Recommendations for a low-sucrose diet, avoiding caffeine, spicy and highly acidic foods are encouraged. Medications such as pilocarpine and cevimeline may be beneficial in certain situations to help stimulate salivary flow.

Altered Taste
Altered taste can be among the most common and burdensome toxicity for survivors. Taste disturbance is most pronounced around 2 months after end of radiation and recovery is expected over the course of years. It is important that survivors stay in regular contact with their dietitian or nutritionist to optimize their food intake if altered taste is particularly prominent.

Speech, voice, or resonance disturbance may alter understandability or acceptability of verbal communication in survivorship. Both surgery and radiation therapy can lead to anatomical changes which make articulation and/or phonation more challenging. Survivors can be referred to a speech language pathologist for assessment and management of speech, voice, and resonance disturbance.

Oral/Dental Health
Ongoing, diligent attention to oral health is essential in survivors treated with radiation. Survivors should brush with a soft toothbrush, floss after each meal, do daily fluoride treatments using 1.1% sodium fluoride paste as a dentifrice or in customized delivery trays and have regular dental cleanings. There is an increase in oral complications after treatment with caries, gingival disease, gum disease and rare but possible, osteonecrosis of the jaw. Close monitoring of dental and oral health should continue as long as salivary flow is reduced.

How do psychosocial factors influence survivorship?

Treatment may dramatically change body appearance and alter the survivor’s perception of self. Both body image concerns and diminished self-perception among survivors have been shown to be high. Survivors often report ongoing difficulties in recovery and returning to “normal” after treatment. Some survivors experience fear of recurrence, which contributes to significant mental health problems for which they already have an increased risk, including distress, depression, and anxiety. The consequences of untreated depression can be severe. For instance, several reports have demonstrated that the incidence of suicide in cancer patients may be significantly higher than among the general population. From a therapeutic standpoint, untreated depression has been demonstrated to affect compliance to prescribed therapy, wound healing, appetite and contribute to prolonged hospital stays, sleep disruption, decrease motivation and less fulfilling social lives. Providers should be familiar with the mental health concerns that patients may experience. The utilization of tools to screen for symptoms and the development of resources to care for the survivor are of utmost importance.

Why is a survivorship care plan needed?

Providers should institute evidence-based survivorship care plans to standardize ways of follow-up so that follow-up for head and neck cancer patients is optimized after treatment. Surveillance and screening for recurrent disease forms the primary basis for follow-up and should be performed on a regular basis, incorporating imaging as needed. Other recommendations from the American Cancer Society survivorship guidelines include healthy weight maintenance, smoking cessation, education on signs of recurrence, engaging in physical activity, achieving a well-balanced diet and avoiding alcohol consumption. The number of cancer survivors is growing drastically with aging of the baby boomer population. Cancer survivors face physical, psychosocial, emotional and mental impacts from cancer and treatment. Survivors deserve comprehensive, high quality and coordinated clinical follow up care. There is a need for partnership between the survivor’s primary care physician and oncologist to provide this. Survivors and caretakers should be provided with tools and resources to live beyond cancer treatment. Knowing what to expect after cancer treatment can help patients make plans, lifestyle changes, and important decisions about the future. Cure is simply not enough.

How can patients take charge of survivorship?

Survivors may experience a mixture of strong feelings, some of which appear contradictory. These include joy, concern, loneliness, relief, guilt and fear. Some people say they appreciate life more after a cancer diagnosis and have gained a greater acceptance of themselves. Others become very anxious about their health and uncertain of how to cope with everyday life. It is natural for patients to express feeling isolated after learning that their treatment has concluded and that relationships which were built with the cancer care team are drawing to a close. This is often because patients have developed a bond with the care team which has provided a powerful sense of security during treatment.

Additionally, new worries and challenges surface over time, such as any late effects of treatment, emotional challenges including fear of recurrence, sexuality and fertility concerns and financial and workplace issues. Every survivor has individual concerns and challenges. With any challenge, a good first step is being able to recognize a cancer survivor’s fears and to feel comfortable talking about them. Many survivors find it helpful to join an in-person support group or an online community of survivors. This allows a sense of communication and shared dialogue with people who have had similar first-hand experiences. Other options for finding support include talking with friends or members of the health care team, individual counseling, or asking for assistance at the learning resource center of the center where treatment was provided.

You can find help through Support For People with Oral and Head and Neck Cancer (SPOHNC). Concerns such as emotional and psychosocial needs are addressed through SPOHNC’s many programs, including its National Survivor Volunteer Network matching program (more than 200 volunteers strong), and its more than 125 SPOHNC Chapter Support Groups located throughout the United States.

As mentioned in this article, there can be many debilitating side effects following treatment for oral, head and neck cancer. You can find additional information in SPOHNC’s print resources as well. These print resources include “News From SPOHNC,” SPOHNC’s Product Directory, Volume 1 & 2 of Eat Well Stay Nourished A Recipe and Resource Guide For Coping With Eating Challenges, Meeting the Challenges of Oral and Head and Neck Cancer – A Guide for Survivors & Caregivers and We Have Walked in Your Shoes, A Guide to Living with Oral, Head and Neck Cancer – Second Edition.

SPOHNC’s programs and print resources are a wealth of much needed support and information for survivorship and survivorship care following the diagnosis and treatment of oral, head and neck cancer. To find out more, contact SPOHNC at 1-800-377-0928, or e-mail info@spohnc.org.

What should a follow-up care plan consist of?

All patients who conclude cancer treatment should be provided a follow-up care plan. The National Cancer Institute and other cancer organizations recommend this document for people who have finished treatment. The details of this plan will depend on the type of cancer and type of treatment, along with the patient’s overall health. It is usually different for each person. In general, survivors return to the doctor every 3 to 4 months initially, and once or twice a year after that. Studies have also shown that patients who received a copy of their treatment summary were more likely to report having good care and communication from their doctor. This information is invaluable to share with the primary care physician and any other doctors involved in providing care. It is important that patients keep this summary with their medical records so that key facts about treatment are always in the same place and secure.

What questions should patients ask during follow-up?

All patients should have follow-up care after treatment for head and neck cancer. Follow-up care means returning to see a doctor for regular medical checkups once treatment has concluded. The purpose of follow-up is to not only survey for signs and/or symptoms of cancer recurrence but also to discuss ways to optimize quality of life. Checkups are the time to check for physical and/or emotional effects that may develop months or even years after treatment ends. Patients should be encouraged to be pro-active about follow-up care. Common questions to ask include the following:

  • What are symptoms or other ‘red flags’ I should be watching for?
  • How can I be pro-active about screen-ing for cancer recurrence?
  • How often do I need to see the doctor?
  • How often should tests and/or blood draws be performed? What can I do from a lifestyle standpoint to optimize quality of life?
  • What can be done to relieve pain, fatigue and/or other side effects after treatment?
  • How long will it take for me to recover and feel more like myself?
  • Is there anything I can do to keep the cancer from coming back?
  • Are there foods or drinks I should avoid?
  • Are there any support groups I can attend?

Editors Note: Dr. Allen Chen is Professor and Chairman in the Department of Radiation Oncology at the University of Kansas School of Medicine. He is a graduate of Cornell University, earned his Medical Degree from Yale University School of Medicine, and completed residency training at the University of Texas MD Anderson Cancer Center and the University of California, San Francisco, School of Medicine. Dr. Chen is a leading expert in the management of head and neck cancers and is a frequently invited speaker for conferences across the world. He has particular interests in clinical trial development, medical education, and bioinformatics.

Liza Murray is a nurse practitioner in the Department of Radiation Oncology at the University of Kansas School of Medicine and has a particular interest in survivorship and quality of life for patients undergoing cancer care. After completing her Bachelor of Science degree at the University of Kansas, she earned a Master’s of Science Degree in nursing at the University of Kansas. Liza was the recipient of the Colleen P. Kosiak Clinical Excellence Award during her master’s program and has also been honored with the “Outstanding New Graduate Nurse Award” and the “Hematology and Oncology Nurse Excellence Award” during her tenure at The University of Kansas Hospital.

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