Head and Neck Cancer Survivorship Part II: Other Essentials

Liza Murray, APRN & Allen M. Chen, MD

We’re back! We’d like to expand on our survivorship topics from September’s newsletter and highlight more survivorship challenges for head and neck cancer patients. We appreciate the feedback and insight from our part I article. We know that many survivors are affected physically, psychosocially, spiritually, and financially. Here are 5 additional topics of consideration in survivorship. We hope to bring recognition to these topics so survivors know they are not alone.

Financial Toxicity/Burden

Any cancer diagnosis can cause substantial financial impact among patients and caregivers throughout the trajectory of the illness. Survivorship can expand the time frame of expenditures due to patients living longer but still dealing with the sequela of treatment. Not only is the patient impacted, the caregivers and family are as well. Factors influencing financial constraints include increased direct out-of-pocket expenses, increasing health care costs, costs associated with changes in diet and nutritional supplements, supplies, loss of income secondary to decline in functional status, job loss, purchasing new clothes because of weight fluctuations, medications, childcare, increased utility bills, vehicle expenses, fuel, hotel stays, etc. Often patients demonstrate strategies to mitigate their financial burden, including reductions to other health-related areas, clothing, food, and leisurely activities. At extremes, patients have reported house repossessions and home refinancing. The assessment of impact on financial distress on overall quality of life and suffering are of paramount importance. Financial burden is associated with anxiety, depression and poor quality of life. As providers, it is important that we refer patients and caregivers to social work/financial assistance counselors who can help navigate through assistance and resources per institution. In addition, financial assessment tools should be utilized more to assess this domain and help us better understand what is happening to our patients to ease suffering and improve quality of life.

Coping with Role Transitions at Home

Morbidity has been well documented among head and neck cancer survivors as discussed in survivorship part I of this discussion. What happens when survivors integrate back into home life as a parent, spouse, sibling, grandparent, professional, etc.? This transition often brings a different cascade of stressors to the survivor. There is moderate concern about cancer affecting the parental role, in terms of the usual practical things parents do for their children, but also the emotional consequences for the child. Parental role concerns expand to impact of mood, physical limitations, and changes in their routines. As involved the provider team is integrating survivors back to life, caregivers are just as important in this transition. Caregivers as well experience distress in this transition period. Caregivers and patients adapt to new roles during active treatment and now there is a need for another set of role changes or adaption that call for changes in demands of social, work and other relationships. Some institutions have a psycho-oncology team dedicated to improving the mental health of survivors and their caregivers. It involves everyone in the support system: caregivers, spouses, children, couples, and family. The care team helps families communicate better, acknowledge the situation, finding different ways to approach problems, and encouraging caregivers to take care of themselves.

There are challenges transitioning back to work for survivors. Rehabilitation programs after treatment can help lessen the anxiety of returning to work. Rehabilitation specialists help survivors seek supportive interactions with the environment that are essential to enable the ability to work. Survivors should be proactive with employers and help set reasonable expectations and provide realistic plans for work to be successfully completed. Physical exercise has been shown to positively influence return to work and work performance.


There is a high prevalence of poor sleep quality in head and neck survivors. Sleep can be affected by depression, anxiety, pain, dry mouth, alcohol consumption, tracheostomy tube, feeding tube, and functional disabilities. Sleep related breathing disorders such as obstructive sleep apnea is common in patients with tumors in the head and neck region. Daytime fatigue and sleepiness are common complaints and can have detrimental effects on quality of life. Anatomic distortion from the tumor and/or treatment may predispose survivors to obstructive sleep apnea. Referral to a sleep specialist is one intervention that may benefit head and neck survivors. Mindfulness-based stress reduction programs are available as an app on mobile devices. Yoga, tai-chi, exercise, and meditation can improve sleep disturbance. Medications can also assist.

Sexual Function

Sexuality is a fundamental, life-affirming experience that can profoundly be affected by cancer treatment. Although there is controversy regarding the extent and nature of sexual problems most reports confirm that cancer and its treatment have deleterious effects on sexual function among survivors. Decreased desire, fear of performance and decreased satisfaction have been reported among survivors. Poor self-image, increased isolation and disfigurement are commonly mentioned as a barrier to head and neck cancer patients who have undergone surgery. Disfigurement acts as a physical barrier between the subject and partner thus hindering sexuality within the couple. The rise in human papilloma virus (HPV) head and neck cancer has raised complicated issues for survivors and partners, including feelings of guilt and responsibility as well as questions about transmission and allowable sexual practices. When sexual problems go unaddressed, survivors can interpret this to mean that sexual dysfunction falls in the category of treatment related collateral damage that must be endured. Perhaps this is one of the most unfortunate misperceptions that survivors live with – a mistaken understanding that there are no effective treatments for sexual dysfunction after cancer. Survivors and partners often live for years with this issue weighing heavily on their mind and for those who have poor communication skills or relationship vulnerabilities a recommendation for intensive intervention such as couples counseling may be particularly helpful. We know that more work is needed to better understand the impact of systematic approaches helping patients manage sexual function. Strategies to promote sexual function after cancer treatment include medications, couples-based psychotherapeutic and psycho-educational interventions. Your treatment team may have resources for referrals to urologists, gynecologists and sexual health psychologists who are knowledgeable about sexual medicine. The first step is to simply acknowledge this aspect of life in survivorship like all other areas of function, no different than pain, sleep and fatigue.

Pain Management

Pain medication plays an important role in the interdisciplinary management during head and neck treatment and post treatment period for survivors. Pain should be as aggressively managed as their cancer is. Survivors are often faced with many questions regarding narcotic use and coming off them: when and how, uncertainty and anxiety, will the pain return, the pain is gone but the medications are useful for sleep and numbing other parts of life because a cancer diagnosis was already too much, stigma and fear, societal changes and norms, addiction and mental pain. Long term use of narcotics causes a dependence for the body. Stopping narcotics cold turkey is not advised and should be tapered slowly under the direction of your provider. Even with a slow taper patients will experience some form of withdrawal and some will resort back to taking their pain medications regularly to avoid the feelings. Survivors often mention the most challenging post treatment task is coming off narcotic pain medications. Withdrawal symptoms can be uncomfortable but generally not life-threatening and will go away. Withdrawal deserves more attention as survivors often feel they’ve reached a set back in their recovery when experiencing withdrawal or feel ashamed like they’ve led themselves to being “hooked on opioids.” Withdrawal symptoms include agitation, anxiety, muscle aches, restlessness, extreme fatigue, difficulty sleeping, sweating, abdominal cramping, nausea, vomiting and diarrhea. Withdrawal can last a few days up to a week, though some report longer. There are medications that can help counteract withdrawal symptoms such as clonidine. Clonidine can reduce anxiety, agitation, muscle aches, sweating, and cramping. Acetaminophen or ibuprofen can help aches. Meclizine or dramamine can help nausea. Imodium for diarrhea. Dehydration can be problematic, hydrating and flushing the body with fluids are essential during this period.

We also understand that not all survivors will be able to completely come off pain medication due to chronic tissue damage from the cancer and/or treatment. Pain management teams specialize in maximizing quality of life and managing pain with many strategies. Pain management teams are often approached under the direction of multiple disciplines (nursing, social work, physician, advanced practice providers, case managers, occupational therapy, physical therapy, psychologists, and nutritionists). A referral from your oncology team should be considered for chronic pain management.

Post Traumatic Growth

With the high level of morbidity that comes with head and neck cancer treatment one may question how could anyone find having such a disease a positive event? We’ve all heard of post-traumatic stress disorder (PTSD) which is well described in the literature, even for cancer survivors. PTSD can be described as the negative result of an extremely troubling event. What you may not be familiar with described in recent literature for head and neck survivors and other cancers is post traumatic growth and benefit finding. Both can be described as the acquisition of benefit from adversity and growth with which individuals coping with the aftermath of trauma reconstruct or strengthen their perceptions of self, others, and meaning of events. It can be described as the experience of significant positive change arising from the struggle with a major life crisis such as cancer diagnosis and enduring treatment. Survivors with “benefit finding” often feel an increased sense of personal strength, more rich existential and spiritual life, and rearrangement of priorities. Social support and social connectedness benefit this acquisition. Head and neck support groups and organizations have a substantial impact on promoting and restoring physical and emotional health. It allows a sense of relating to others who’ve underwent similar treatments. SPOHNC has more than 130 Chapter support groups across the country where you can find help, hope and support.

Wrap Up

As if the diagnosis was not enough, coping with the financial hardships, role transitions, sexual limitations and disfigurement, restless sleep, and trauma of cancer continues to impact quality of life in survivors. The comfort and lifestyle of financial security can be swept right from underneath you. The profound journey one takes through diagnosis and treatment ultimately impacts the mental and physical challenges of transitioning back into a parent, spouse, or professional role after treatment. The questions surrounding narcotic use and coming off are often surrounded by uncertainty, fear, isolation, and anxiety. The adversity hypothesis of “what doesn’t kill you makes you stronger” suggests that people can use adversity to develop as human beings through traumatic experiences. Validation that comes from acknowledgement in these survivorship issues is enormously powerful and provides a key step in the delivery of genuine whole person survivorship care.

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 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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