Made of More is an initiative created by HNCA, SPOHNC, THANC, CancerCare, and Eisai Inc. to help people affected by head and neck cancer (HNC) feel heard and supported as part of a broader community. Those who experience HNC are made of more than just their disease. Although they may face many difficult challenges, people with HNC and their loved ones are resilient—and they have important stories to tell. On this site, you'll find personal accounts of those impacted by HNC, as well as useful resources and information to help others navigate their own experiences with HNC.
Although head and neck cancer (HNC) includes many different types of cancers, people impacted by HNC often face similar challenges from diagnosis to treatment and beyond—like difficulty eating, swallowing, or talking. Below, you'll find stories of six people who have either had or cared for someone with HNC. These accounts are not only about their personal experiences with HNC, but also their passions, and how each of them are made of more.
Ashwin & Becky
Head and neck cancer (HNC) broadly refers to tumors that occur in different areas of the head and neck. These areas may include the mouth, lips, tongue, nasal cavity, larynx (voice box), throat, sinuses, and lymph nodes. Head and neck tumors are often made up of abnormal cancer cells known as squamous cell carcinoma, the most common type of all head and neck cancers.
HNC accounts for nearly 4% of cancers in the United States, with an estimated 66,920 new cases are expected to be diagnosed in 2023. It is twice as likely to occur in men than women, and the average age at diagnosis is 62 years old—however, about one-quarter of all HNC occurs in individuals under the age of 55. Some data suggests HNC diagnoses may be rising in younger populations due to the prevalence of HPV-related cancers.
While signs and symptoms of HNC can vary based on the specific location of the tumor, common symptoms may include:
Lumps or sores in the head or neck area that do not go away
Difficulty swallowing or eating, which may result in weight loss
Persistent sore throat or voice change
Pain or tenderness in the head or neck area
Risk factors include:
Tobacco and alcohol use
Exposure to viral infections
Cancer of the head and neck is sometimes categorized as HPV-negative or HPV-positive. Infection with the human papillomavirus (HPV), especially the HPV-16 subtype, is usually associated with oropharyngeal cancers. These occur in the oropharynx, which is comprised of the soft palate, side and back wall of the throat, tonsils, and the back third of the tongue.
Everyone's head and neck cancer (HNC) experience will be unique to their diagnosis, personal situation, and treatment plan. Although you might not seek care from everyone listed here, these are some of the healthcare professionals you may seek and receive care from at various points in your cancer experience.
Click on the icons below to learn about each role
This individual is trained to help guide you through the healthcare system. They help you understand the information you may need associated with your care. They may also assist with financial resources, insurance benefits, and coverage.
Some dentists routinely screen for cancers of the mouth, and if they notice something suspicious, may refer you to see a specialist and/or for a biopsy. Some treatments for head and neck cancer, like radiation therapy, may increase your risk of dental complications in the future, so you may need specialized dental care before, during, and after cancer treatment. You may want to seek out a dentist with expertise in oncology. It will be important to communicate your treatment details—like type of treatment or start and end dates—with your dental team.
ENTs, also known as otolaryngologists, specialize in diagnosing and treating diseases of the ear, nose, and throat. These physicians take a closer look at the area of concern and may conduct or order imaging tests (like a nasal endoscopy, MRI or CT scan), take samples for a biopsy (a procedure where tissue is removed for examination to determine if cancer is present) to help detect cancer, and perform surgery.
A medical oncologist will work with you to determine the best treatment plan, which may include chemotherapy, targeted therapy, or immunotherapy. They may also collaborate with other specialists based on your treatment approach.
This could be a psychiatrist, psychologist, social worker, or therapist that provides emotional and social support; some specialize in oncology. Mental and emotional wellbeing are important aspects of health, and a trained mental health professional can help you with many of the feelings that may arise when dealing with cancer.
Nurses, some of whom specialize in oncology, are trained to help provide education and support with day-to-day things like managing side effects and answering any questions from you or your caregiver.
A specialist educated and trained in the area of diagnosis and management of mouth diseases.
A medical professional who is trained in physical treatments, such as exercise and massage. These individuals will work with you both during and after treatment to help rebuild and strengthen muscles in your head and neck, and regain function to help you adjust to your new normal during everyday activities
A PCP might be the first healthcare provider you visit, as they are typically involved in day-to-day health concerns for their patients. The PCP may refer you to see an ear, nose, and throat (ENT) specialist (also known as an otolaryngologist) if there is a concern.
This is an oncologist who specializes in treating cancer with radiation therapy. They will coordinate with you and your cancer care team if you require radiation, which may be used as a sole treatment, in combination with other treatments, or after surgery to help prevent cancer from coming back.
A registered dietician is a licensed medical professional specializing in diet and nutrition. You may want to look for an RD who specializes in oncology. An RD can help you adjust the food you’re eating to ensure proper nutrition while also helping with eating-related challenges that may be caused by certain treatments or surgeries.
This is a specialist who provides educational and clinical services to help minimize challenges with speaking and swallowing, which may become impaired as a result of the cancer itself, treatment, or surgery.
If you are diagnosed with HNC that can be removed surgically, you will likely see a head and neck surgeon who is an ENT. Depending on your individual needs, you may also see a reconstructive, microvascular, or maxillofacial surgeon.
People dealing with HNC need support beyond just their medical care team. The Made of More advocacy partners and other organizations offer many resources for patients and caregivers. In the sections below, you will find different types of resources that can help you as you go through HNC diagnosis, treatment, and recovery.
General advocacy resources
Join a support group
If you or someone you care about has HNC, you don't have to go through it alone. Explore the links below to browse different support groups and programs that help you connect with others who may understand what you're going through.
Have important conversations
Talking about cancer isn't easy—whether it's knowing what to ask your healthcare providers or how to talk to others about your diagnosis. These resources may help you have conversations that are difficult or uncomfortable.
Resources for children and young adults
Although HNC typically affects people over the age of 55, it's becoming more common among younger adults, who may have concerns about topics like fertility. These resources are for young adults looking for more information, as well as for children who have a loved one affected by cancer.
Nutrition and diet resources
It can be difficult to maintain a balanced diet as you live with and manage HNC. These resources can help you pursue optimal nutrition and address potential challenges.
Financial and insurance support
There are a number of practical considerations associated with HNC care, including insurance and finances. This collection of resources can provide assistance in these areas and help answer questions that may be top-of-mind.
Resources for caregivers
If you are providing care to someone with HNC, it's important to be aware of what to expect. Taking care of yourself is vital so that you can provide the physical, emotional, or practical support that your loved one needs. These resources may help, or you can contact HNCA, SPOHNC, THANC or CancerCare directly for more information.
Search clinical trials
Clinical trials are research-based studies to test investigative treatments. There are many medicines for different types of HNC in development. Below are links to resources where you can search for clinical trials to potentially discuss with your oncologist.
Watch the video below to hear the personal stories of 7 people affected by HNC and how they're each #MoreThanHNC
To view more personal stories, visit the Made of More YouTube channel.
Eisai Inc. does not review the information contained on the following resource for content, accuracy, or completeness. Use of and access to the information are subject to the terms, limitations, and conditions set by the third-party producer. Eisai Inc. makes no claims about the accuracy or any other aspect of the information contained on this resource, nor does Eisai Inc. necessarily endorse this resource.