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This series of patient and caregiver resources is available for free online through funding received by the NCCN Foundation®, generously supported by the Head and Neck Cancer Alliance (HNCA), Oral Cancer Foundation, and Support for People with Oral and Head and Neck Cancers (SPOHNC). The content has also been endorsed by the Thyroid, Head and Neck Cancer (THANC) Foundation and the Thyroid Care Collaborative.
“When I was first diagnosed with Stage 4 tongue cancer, I was in shock,” said Tom Bennett, Survivor and HNCA Ambassador. “I thought, ‘Why me? How can I have cancer?’ For people who are newly diagnosed, there is so much to process emotionally, in addition to the steep learning curve about the disease itself. These guidelines will help patients and caregivers understand more about treatment options in a plain and straightforward way, which is important during a stressful time.”
“I wish someone had handed me a publication like this the day my husband received his diagnosis,” said Linda Clyne, Spouse, Caregiver, and SPOHNC Facilitator. “This one resource could have saved me many sleepless nights and internet searches that yielded too much unfiltered information and too little encouragement. Patients and their families will appreciate the wealth of information it provides, intelligently-presented with precision, clarity and a minimum of medical jargon.”
NCCN has a single clinical version of the guidelines for health care providers covering all head and neck cancers (aside from thyroid cancer, which is covered separately). However, the patient version was divided into three books, one on Oral Cancers (mouth and lips), one on Nasopharynx Cancers (the passage between the nasal cavity and the soft palate), and the newly-published book on Oropharynx Cancers (generally considered the back of the throat, including the tongue base, tonsils, soft palate, and pharyngeal wall). All are available in digital form for free at NCCN.org/patients and via the NCCN Patient Guides for Cancer App for mobile and tablet. Printed versions are available at Amazon.com for a nominal fee.
Sharon Spencer, MD, Professor and Chief of Medical Services in the University of Alabama at Birmingham Department of Radiation Oncology and Vice-Chair of the NCCN Guidelines® Panel for Head and Neck Cancers, explained why trustworthy and comprehensive patient information is particularly crucial for these types of cancers.
“The head and neck area is incredibly important for speaking and eating, and it’s the first thing people see and feel,” said Dr. Spencer, also a senior scientist at the O’Neal Comprehensive Cancer Center at UAB,. “When you disrupt a patient’s life with radiation, chemo, or surgery to the head and neck, it’s especially challenging for them and their families. Their diet has to change, their salivary function may change, and many people experience a lot of fatigue and emotional distress. These guidelines can help them prepare and reinforce the information they get from their clinicians, better enabling caregivers to serve as coaches and motivators throughout the entire process.”
Dr. Spencer stated that the cure rates are improving, but patients need a multidisciplinary team with a lot of supportive care in order to manage any difficulties that arise during treatment. She also pointed out some available preventive steps such as widespread vaccination against the Human Papilloma Virus (HPV)—particularly among adolescents—and avoiding tobacco products, which are associated with the two main types of oropharyngeal cancer. While there are better overall survival rates for HPV-positive oropharyngeal cancer, vaccination at a younger age is an effective way to prevent it from occurring in the first place. Nasopharyngeal cancers, which are associated with the Epstein Barr virus but not HPV, are much less common in the United States than oropharyngeal cancers. For both types, patients typically present with large neck nodes, and are treated primarily with surgery or chemotherapy and radiation. Advances in robotic techniques for minimally invasive surgery have contributed to the improving cure rate, while maximizing preservation of function.
The NCCN Guidelines for Patients address disease types accounting for approximately 94% of all cancer diagnoses in the United States across 44 books, including breast, colon, pancreatic, prostate, and many more. They are updated and expanded on a regular basis in collaboration with more than 100 patient advocacy organizations. Visit NCCN.org/patients to learn more or make a donation to the NCCN Foundation to support these and other essential resources for people with cancer.
About the Head and Neck Cancer Alliance
The Head and Neck Cancer Alliance (HNCA)’s mission is to advance prevention, early detection, treatment and rehabilitation of oral, head and neck cancer through public awareness, research, advocacy and survivorship. Through united and collaborative efforts, HNCA provides support to head and neck cancer patients throughout the year, supports ongoing research in head and neck oncology and educates patients and families in the disease process, treatment, and prevention of oral, head and neck cancers. Learn more at www.headandneck.org.
About Support for People with Oral and Head and Neck Cancer
Support for People with Oral and Head and Neck Cancer (SPOHNC) is a nonprofit organization involved in the development of programs of support. As such it can have an enormous positive impact on meeting the psychosocial needs of patients as well as preserving, restoring and promoting physical and emotional health. SPOHNC is dedicated to raising awareness and meeting the needs of oral and head and neck cancer patients through its resources and publications. Visit SPOHNC at www.spohnc.org to become empowered with the essential programs and resources.
Together We Heal!
About the NCCN Foundation
The NCCN Foundation® was founded by the National Comprehensive Cancer Network® (NCCN®) to empower people with cancer and advance oncology innovation. The NCCN Foundation empowers people with cancer and their caregivers by delivering unbiased expert guidance from the world’s leading cancer experts through the library of NCCN Guidelines for Patients® and other patient education resources. The NCCN Foundation is also committed to advancing cancer treatment by funding the nation’s promising young investigators at the forefront of cancer research. For more information about the NCCN Foundation, visit NCCN.org/patients.
About the National Comprehensive Cancer Network
The National Comprehensive Cancer Network® (NCCN®) is a not-for-profit alliance of leading cancer centers devoted to patient care, research, and education. NCCN is dedicated to improving and facilitating quality, effective, efficient, and accessible cancer care so patients can live better lives. The NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines®) provide transparent, evidence-based, expert consensus recommendations for cancer treatment, prevention, and supportive services; they are the recognized standard for clinical direction and policy in cancer management and the most thorough and frequently-updated clinical practice guidelines available in any area of medicine. The NCCN Guidelines for Patients® provide expert cancer treatment information to inform and empower patients and caregivers, through support from the NCCN Foundation®. NCCN also advances continuing education, global initiatives, policy, and research collaboration and publication in oncology. Visit NCCN.org for more information and follow NCCN on Facebook @NCCNorg, Instagram @NCCNorg, and Twitter @NCCN.
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