The National Comprehensive Cancer Network (NCCN) has published a third book to complete its NCCN Guidelines for Patients: Head and Neck Cancers series. Each book includes detailed, expert guidance on what to expect and management options for various cancers that impact the mouth and throat, the NCCN said.
The information is based on the NCCN Clinical Practice Guidelines in Oncology but is presented in easy to read language and formatting with charts, images, and a glossary of medical terms to empower patients and caregivers to make shared decisions on the care plan that’s right for them, the NCCN said.
An independent study recently found the NCCN Guidelines for Patients to be among the most trustworthy options for cancer patients seeking information online, and they can be a useful tool through the continuum of care, the NCCN said.
The series of patient and caregiver resources is available for free online through funding received by the NCCN Foundation and supported by the Head and Neck Cancer Alliance (HNCA), the Oral Cancer Foundation, and Support for People with Oral and Head and Neck Cancers (SPOHNC). The Thyroid, Head and Neck Cancer (THANC) Foundation and the Thyroid Care Collaborative also have endorsed the content.
“When I was first diagnosed with Stage 4 tongue cancer, I was in shock. 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,” said Tom Bennett, survivor and HNCA ambassador.
“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,” said Bennett.
“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,” said Clyne.
NCCN has a single clinical version of the guidelines for healthcare providers covering all head and neck cancers, aside from thyroid cancer, which is covered separately. The patient version was divided into three books:
- Oral Cancers (mouth and lips)
- Nasopharynx Cancers (the passage between the nasal cavity and the soft palate)
- 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 devices. 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 (UAB) 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 Spencer, who also is 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,” said Spencer.
“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,” said Spencer.
Spencer speculated that the cure rates are improving, but patients need a multidisciplinary team with a lot of supportive care to manage any difficulties that arise during treatment. She also said some available preventive steps such as widespread vaccination against the human papillomavirus (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, Spencer said. 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 regularly in collaboration with more than 100 patient advocacy organizations.
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