If you’ve just gotten a head & neck cancer diagnosis, you probably want to learn all you can about this disease. That’s what this page is here for.
It’s hard to think straight, or know what websites to trust, after a cancer diagnosis. So we list a few resources in various categories that we believe are good places to start.
Of course, Head & Neck cancer isn’t actually one cancer. It’s a group of cancers that occur in the head or neck area. Hopefully you remember which kind your doctor said you have. You’ll want to research that specific type too.
A good idea is to start here, with general information about Head & Neck cancers. Then move on to the specific kind you have.
The cancers that are usually grouped into head & neck are:
- Oral cavity cancer: This is the most common kind of Head & Neck cancer. It includes your lips, and the entire inside of your mouth, including your tongue.
- Throat cancer (pharyngeal cancer): The throat is also called the pharynx, so throat cancer is pharyngeal cancer. This kind of cancer is actually subdivided even further into three kinds. They’re named based on what part of the throat they’re in:
- Nasopharyngeal cancer: cancer of the nasopharynx, which is right behind your nose.
- Oropharyngeal cancer: cancer of the oropharynx, the middle part of your pharynx (throat).
- Hypopharyngeal cancer: cancer of the hypopharynx, the bottom of your throat.
Here’s a picture showing the three parts of a throat.
- Laryngeal cancer: Cancer of the voice box (larynx).
- Paranasal sinus and nasal cavity cancer
- Salivary gland cancer
- Metastatic squamous neck cancer
Thyroid and parathyroid cancers are sometimes also included in this list.
But not all cancers that grow on your head or neck are necessarily considered to be part of Head & Neck cancer group. Examples of cancers not usually included are brain and eye cancers, along with skin (including scalp), muscle or bone cancer that happens to develop on your head or neck. Some websites and treatment centers do cover these kinds of cancers anyway.
Some of the resources we list also have lists of additional resources you might find useful. You might also want to research specific areas where you want more information. If you need more help evaluating sites you find, check out our research tips page.
Head & Neck Cancer Overviews
Overviews are a great place to start getting a handle on your diagnosis before digging deeper into the specific areas you need/want more information about.
Since head and neck cancers are not all the same, you’ll want to get information about your specific cancer, of course (you can find links to our guides for those in the list above).
But here are a few overviews that cover head & neck cancers more generally and touch on each of the different kinds:
Head and Neck Cancers Fact Sheet: From the National Cancer Institutes (NCI). Includes a diagram to help you better understand where each different kind of cancer grows. It also has links to NCI information on specific cancers.
Head and Neck Cancer on InteliHealth: This brief overview includes a section on what symptoms should prompt you to call your doctor. Information on this site is reviewed by Harvard Medical School faculty.
Head and Neck Cancer on Cancer.Net: An easy-to-navigate guide covering symptoms, treatment options, dealing with side effects, talking with your doctor and more. It also links to more information about each of the different kinds of head and neck cancer. Information on this site is from the American Society of Clinical Oncology.
Organizations Devoted to Head & Neck Cancer
Organizations dedicated specifically to a disease can be great resources for more information and support.
Head and Neck Cancer Alliance: Works to increase awareness of and research into head and neck cancers. Helps support patients living with these cancers. Sponsors Oral, Head & Neck Cancer Awareness Week (OHANCAW). Follow the event on Twitter [https://twitter.com/OHANCAW]. It also helps organizations host screening events to find these cancers early, when they’re most treatable.
American Head & Neck Society: “The single largest organization in North America for the advancement of research and education in head and neck oncology.” Although mostly for doctors, the website does have some information for patients, including a searchable list of Society members to help you in choosing a specialist. It also runs a research and education foundation dedicated to increasing research and research funding for these cancers.
Research into Head & Neck Cancer
Although head and neck cancers get less attention than the “big” cancers like breast, prostate or lung, many researchers are working hard on understanding these cancers. The National Cancer Institute’s research portfolio alone includes almost every aspect of the disease, from prevention to survivorship.
If you’d like to be part of the research, you might qualify for a clinical trial. They’re not for everyone, but these sites give you a chance to see what researchers are up to and decide for yourself if a trial might be right for you. Of course, you’ll want to discuss what you find with your doctor.
Head and Neck Neoplasms at ClinicalTrials.gov: This search shows you results for a search on the term “head and neck neoplasms.” It’s limited to trials that are open now (although some may not be recruiting yet). You can modify the search by location, age group and more.
Head and Neck Cancer Clinical Trials: This list is from CenterWatch and lists trials currently recruiting patients. The list is organized by state. The site allows you to filter by study phase, gender, age and/or location. You can also sign up to get emails notices when new trials are added to this list.
You’ll also want to check research and clinical trials for your specific kind of cancer.
Forums and Support Groups for Head & Neck Cancer
Family and friends can be a wonderful support system. But sometimes you also need to connect with others who have been (or are) where you are. These resources may help.
Support for People with Oral and Head and Neck Cancer: A non-profit organization with local chapters around the country that hold in-person support groups. See if there’s a chapter near you. This organization has also published two recipe & resource guide books to help you stay nourished even when faced with eating challenges like trouble swallowing.
Head and Neck Cancer Alliance on Inspire: Welcomes family, friends and caregivers as well as patients. Has separate sections for family and friends. For patients, topics range from newly diagnosed to treatment, financial issues and a section on survivor stories.
HEAD-NECK-ONC from ACOR: This listserv (mailing list) group from the Associated of Cancer Online Resources had 394 subscribers when we visited. You must be registered to see posts.
For more support groups geared toward cancer patients with any kind of cancer, see our Cancer Patients Resources page.
Other Resources for Head & Neck Cancer
Head & Neck Cancer Guide: This site lets you create your own guidebook, customized to your specific situation, to help guide you through your journey. You can also just browse the site to find a lots of valuable information and videos.
Find an ENT: The American academy of Otolaryngology (head and neck surgery) offers a searchable database to help you find an ear, nose and throat specialist (ENT). The form lets you narrow down the kind of ENT by specific specialty, like head & neck surgery.
American Board of Swallowing and Swallowing Disorders: Some head & neck cancers or their treatments can cause trouble swallowing. This site can help you understand the problem and find a specialist to help you cope.
911 4 HNC: This fund helps gives money to head & neck cancer patients with financial need. For now, it’s limited to people living in the greater Washington, D.C. area. But the foundation hopes to expand to other areas.
Information For Kids About Head & Neck Cancer
It can be hard to talk to your kids about your cancer diagnosis. The Head & Neck Cancer Guide may be the answer. This site has a page with information to help make that conversation easier. This page also has links to more information, including FAQ for children about head & neck cancers and additional resources to help your children deal with your diagnosis.
There’s also:
- Head & Neck Cancer Guide for Kids: This section of the site has games and activities to help kids learn more about cancer in an age-appropriate way.
- Head & Neck Cancer Guide for Teens: This section is organized in much the same way as the adults section, with a lot of the same information. But it’s pared down to help teens learn without feeling overwhelmed. Teens also have the option to create the same personalized guidebooks adults can.
We also have additional resources for kids listed on our Cancer Resources for Children & Teens page.
Caregiver Resources
If you’re caring for someone with Head & Neck Cancer, you need support and understanding, too. Taking time to take care of yourself is not selfish. It can actually help you take better care of your loved one, too.
Caring for Someone with Cancer: This section of the Head & Neck Cancer Guide is chock-full of information to help you deal with the challenges of being a caregiver.
We list more resources for people caring for cancer patients on our Resources for Caregivers of Cancer Patients page.
Your local hospital or medical centers may also have support groups for caregivers of people with various diagnoses. Talk with your loved one’s doctors or nurses to see if they can point you in the right direction.