Let's Talk About Head and Neck Cancers
We've got the doctor-approved scoop on causes, symptoms, treatments, and a jillion other facts and tips that can make life with these diseases easier.
Whether you’ve just been diagnosed or worry you could have a head or neck cancer, you’re probably nervous, confused, and maybe a little scared. That’s normal, and everyone featured on HealthCentral with a chronic illness felt like you do now. But we—and they—are here for you. Read on to learn about the realities and challenges you’ll face with this condition, as well as the best treatments, helpful lifestyle changes, where and how to find your head and neck cancer community, and all the crucial information to help you not just manage this condition—but thrive with it. We’re sure you’ve got a lot of questions … and we’ve got the answers you need.
Our Pro Panel
We went to some of the nation's top experts on head and neck cancers to bring you the most up-to-date information possible.
Salvatore M. Caruana, M.D.
Director of the Division of Head and Neck Surgery
New York-Presbyterian Hospital Columbia University Medical Center
New York, NY
Nadia Mohyuddin, M.D.
Head and Neck Surgical Oncologist, Associate Professor of Clinical Otolaryngology
Houston Methodist Hospital
J. Kenneth Byrd, M.D.
Chief of Head and Neck Surgery, Medical Director and Research Director
Georgia Cancer Center at Augusta University
Yes, or highly treatable. As with all cancers, the earlier you're diagnosed, the better. For instance, the overall five-year survival rate for oral and oropharyngeal cancers is 65%, but if diagnosed at an early stage it jumps to 84%.
In terms of treatment, yes. Head and neck cancers caused by HPV generally have a better prognosis (outcome) and may need less intense treatment. In some cases, HPV-caused cancer can be cured through surgery alone.
Participating in these research studies has definite pluses: You may be among the first to receive a better treatment, and the costs of an expensive drug or procedure that you may not have been able to afford are often covered. Downsides? The new treatment may not better than what’s already available, there may be unexpected side effects, or it may not work for you.
There is no one screening test for these cancers, like there is for breast cancer (mammograms) or cervical cancer (pap smears). Get your annual physical and tell your doctor if you use tobacco or drink alcohol. It’s also important to get regular dental checkups because dentists are trained to look for head and neck cancers as well.
What Are Head and Neck Cancers, Actually?
Of all the cancers you could get, head and neck cancers are not the most common. And they’re getting even less so: With the exception of one sub-type, these cancers are on the decline in the U.S. But when they do occur, it’s not pretty: The prognosis can be poor, reoccurrence rates high, and the lifestyle ramifications are huge.
Maybe the most painful part: Head and neck cancers are very often preventable. While they make up only about 4% of all cancer cases, according to the National Cancer Institute, at least 75% of them are caused by tobacco and alcohol use. Head and neck cancers are twice as likely to affect men than women, and they usually occur in people ages 50 and older. This year, an estimated 65,630 people (48,200 men and 17,430 women) will develop head and neck cancer and about 14,500 people will die from them.
About 90% of head and neck cancers begin in the squamous cells that make up the moist linings in areas of your mouth and throat. But their exact form and location can vary, affecting the mouth, throat, voice box, tonsils, jaw, nose, and sinuses. Your cancer will be categorized based on the area in which it originates. Let’s take a closer look:
Mouth: Technically referred to as your oral cavity, this cancer encompasses everything in your mouth, starting with your lips, the front two-thirds of your tongue, your gums, the lining inside your cheeks and lips, the area under your tongue known as the floor, the hard, bony top of your mouth, and the small area of the gum tucked behind the wisdom teeth. In addition, most cancers of the jaw originate in the oral cavity and then extend into the jawbone.
Throat: The hollow tube known medically as your pharynx is about five inches long and begins behind your nose and travels down to the esophagus, which then passes food on to your stomach. The throat has three parts, any of which can serve as the origin of throat cancer:
the nasopharynx or the upper part behind your nose
the oropharynx in the middle, which includes the soft palate at the back of your mouth, the base of the tongue, and the tonsils
the hypopharynx in the lower part of the throat
Voice box: Your doc will call this the larynx—a short passageway formed by cartilage below your throat. Cancer here affects your vocal cords as well as a small piece of tissue, called the epiglottis, which shifts to cover the larynx so that food can’t enter the air passages.
Sinus and nose: Also called cancer of the paranasal sinuses and nasal cavity, in this case the disease takes root in the hollow spaces of the bones surrounding the nose, as well as inside the nose itself.
Salivary glands: These babies make your mouth water and are located near the jawbone in the floor of your mouth. Salivary gland cancer is relatively uncommon, but because these glands contain many different types of cells, there are many different types of salivary gland cancer. Salivary gland cancers can also extend into the jaw.
What Causes Head and Neck Cancers in the First Place?
That tobacco causes cancer is a well-known fact, although most people probably associate it more with lung cancer. Its many forms—cigarettes, pipe tobacco, cigars, chewing or “smokeless” tobacco—spew chemicals that are known carcinogens (cancer-causing agents) into the head and neck, too. There, they proceed to damage the cells, leading to mutations in cell DNA. Over time, as these mutations are copied into new cells, the abnormal cells cluster together and form a tumor. (By the way, evidence is mounting that vaping may be equally dangerous, though it’s too new of a trend to have definitive data.)
Drinking alcohol and using tobacco together raises your risk of head and neck cancers even higher than just smoking or just drinking alone. That’s because alcohol may act as an irritant in the mouth and throat, helping chemicals in the tobacco enter your cells more easily. Alcohol may also slow your body’s ability to break down and get rid of chemicals. Alcohol and tobacco add up to a lethal combo, especially for cancers of the oral cavity, oropharynx (middle of the throat and the back of the mouth), hypopharynx (lower throat), and larynx (voice box).
The other common cause of head and neck cancers is infection by some types of the human papillomavirus (HPV), a group of more than 200 viruses which are spread through vaginal, anal, and oral sex. Not all types of sexually transmitted HPV result in cancer, but 14 types of HPV are considered high risk for cancer, and two of them—HPV16 and HPV18—are responsible for most of the cases of HPV-related cancer.
HPV-related head and neck cancers usually develop in the tonsils, the back of the mouth, or at the base of the tongue, which are known as oropharyngeal cancers. HPV is responsible for 70% of oropharyngeal cancers in the U.S., making them the most common form of HPV-related cancer. (Cervical, anal, penile, vaginal, and vulvar cancers are also caused by HPV.) Fortunately, although HPV-related head and neck cancers are the one sub-type in this cancer category on the rise (especially in men), they are also proving to be among the most treatable with more favorable outcomes.
Other less-common risk factors for cancers of the head and neck include:
Ancestry. Being of Asian descent, and especially Chinese ancestry, is a risk factor for nasopharyngeal cancer.
Epstein-Barr virus. Contracting this virus, which causes mononucleosis or “mono” for short, is a risk factor for nasopharyngeal cancer and cancer of the salivary glands.
Occupational exposure. Certain jobs can increase your risk for head and neck cancers. Exposure to wood dust is a risk factor for nasopharyngeal cancer (the upper part of the throat behind the nose) as well as cancer of the paranasal sinuses and nasal cavity, along with nickel dust and formaldehyde. Exposure to asbestos and synthetic fibers have been associated with cancer of the larynx (voice box). People who work in construction, metal, textile, ceramic, logging, and food industries may also have an increased risk of cancer of the larynx.
Oral health. Poor oral hygiene and missing teeth may be weak risk factors for cancers of the oral cavity. Using a mouthwash that has a high alcohol content is also a possible, but not proven, risk factor for cancers of the oral cavity. Regular dental checkups play an important role: Dentists are trained to detect signs of head and neck cancers, so that teeth cleaning you dread could one day save your life.
Paan (betel quid). This chewable combo of betal leaf and areca nut, popular among Southeast Asians for its stimulant and psychoactive effects (think cocaine), is strongly associated with an increased risk of oral cancer.
Preserved or salted fish. Also popular in Asia, these foods have historically been linked to nasopharyngeal (upper throat) cancer when consumed in childhood (but not adulthood). But recent research suggests they may play a smaller role than originally thought.
Radiation exposure. Previous radiation to the head and neck for cancer treatment or other conditions is a risk factor for cancer of the salivary glands.
Do I Have Head or Neck Cancer Symptoms?
Two weeks. That’s the timeframe you need to remember if you notice something weird with your head or neck—any symptom on the list below that lasts longer than 14 days needs to be checked out. Of course, it could be nothing at all, but don’t take a chance. Here’s what to watch for:
A white or red patch on the gums, the tongue, or the lining of the mouth
Swelling in the jaw that causes dentures to fit poorly or become uncomfortable
Difficulty moving the jaw
Inability to open your jaw to about the width of three fingers
Unusual bleeding or pain in the mouth
Trouble breathing or speaking
Pain when swallowing
Pain in the neck or the throat that does not go away
Pain or ringing in the ears
Symptoms of cancers of the voice box (larynx):
Pain when swallowing
A lump or swelling in the neck
Symptoms of sinus and nasal cavity cancer:
Sinuses that are blocked and do not clear
Chronic sinus infections that do not respond to treatment with antibiotics
Bleeding through the nose
Swelling or other trouble with the eyes
Pain in the upper teeth
Problems with dentures (fit, discomfort)
Symptoms of salivary gland cancers:
Swelling under the chin or around the jawbone
Numbness or paralysis of the muscles in the face
Pain in the face, the chin, or the neck that does not go away
Another big hint something is wrong? The symptom is only occurring on one side of your body. The head and neck are what’s known as paired systems: Their construction is symmetrical—the same on both the left and right. So a lump, pain, or other symptom that is only on one side is a concern. If there’s is a reason to think you might have cancer, your doctor will likely refer you to an otolaryngologist (an ear, nose, and throat doctor) who specializes in head and neck surgery or an oral and maxillofacial surgeon.
How Are Head and Neck Cancers Diagnosed?
The types of tests your doctor will do to determine if you have a head or neck cancer depend on the symptoms you have. The first step will be taking a complete medical history and doing bloodwork to help get a picture of your overall health. Some of the additional tests might include:
Complete Head and Neck Exam
Your doctor will check the entire head and neck area, looking and feeling for any abnormal bumps, skin changes, or swelling. Your doc will also feel your lymph nodes in the neck since this the first place the cancer will travel to.
Because some parts of your mouth and throat are hard to see (like the oropharynx, deep in your neck), your doctor may use mirrors, lights, or special fiber-optic scopes during the exam. (If just the thought of a scope down your throat makes you gag, don’t worry: You’ll be given a numbing spray to make it easier.) Two possible throat exam options are:
Indirect pharyngoscopy and laryngoscopy: To do this test, your doctor will use a small mirror on a long, thin handle to look at your throat, the base of your tongue, and part of the larynx (voice box).
Direct pharyngoscopy and laryngoscopy: For this exam, the doctor puts a flexible fiber-optic scope (known as an endoscope) in through your mouth or nose to examine areas that can’t easily be seen with mirrors, such as the region behind the nose (nasopharynx) and the larynx (voice box), or to get a clearer look at something previously spotted with the mirror.
This exam is done under anesthesia in an operating room. While you’re asleep, the doctor looks inside your nose, mouth, and throat through thin tubes called scopes and may also do a biopsy (see below).
During this procedure, your doctor will remove a small piece of tissue from a tumor or location where there seems to be an abnormal growth, which is then examined by a pathologist in a lab for cancer cells.
Computed Tomography (CT) Scan
Also called a “CAT” scan, this type of imaging takes detailed pictures to see if the cancer has spread to the lymph nodes, lungs, or other organs.
Magnetic Resonance Imaging (MRI)
MRIs use radio waves and strong magnets to take detailed pictures that reveal more about the cancer size. This type of imaging will also reveal additional tumors.
This test reveals how your throat looks as you swallow. During this procedure, you drink a thick, chalky liquid with barium in it, which coats the inside of the throat and helps doctors see the area more clearly on an x-ray.
These may be done to see if the cancer has spread to the lungs.
Positron Emission Tomography (PET) Scan
If your doctor thinks the cancer has spread but isn’t sure where, you may be given a radioactive substance called a "tracer" that can be seen inside your body with a special camera. The tracer is aborbed in organs and tissues of your body where there is a high level of activity—“hot spots” where the cancer is likely to be found.
The Next Step: Staging
Once it’s been determined that you have a head or neck cancer, the next step is called staging: a way of describing where the cancer is located, the size of the tumor, and whether or not it has spread and is affecting other parts of the body. Your doctor will use the results from your diagnostic tests and scans to determine where your cancer falls in the TNM staging system:
Tumor (T): Where is it and how large is it?
Node (N): Has the cancer spread to any lymph nodes—tiny, bean-shaped organs that help fight infection—and if so, where and how many?
Metastasis (M): Has the cancer spread to other parts of the body, and if so, where and how much?
The results are then combined to determine the stage and the best course of treatment. There are five different stages, ranging from 0 (precancer) to 4, which is a cancer that has metastasized to another part (or parts) of the body.
Each type of head and neck cancer has a different staging system. For example, let’s say you have an HPV-related oropharyngeal cancer. Your stage would first be evaluated depending on whether any lymph nodes were removed during surgery. If they were, your cancer would get a pathological staging—that’s why you see the little “p” before the “N” (node) ranking below. If lymph nodes weren’t removed (sometimes they can’t be or don’t need to be), you’d get what’s known as clinical staging instead. (We know, it’s complicated!) Here’s the breakdown:
Stage I: The tumor is 4 cm or smaller. The cancer involves 4 or fewer lymph nodes. Cancer has not spread to other parts of the body (T0 to T2, pN0 or pN1, M0).
Stage II: Either the tumor is 4 cm or smaller, cancer has spread to more than 4 lymph nodes, and there is no spread to other parts of the body (T0 to T2, pN2, M0). Or the tumor is larger than 4 cm, it has invaded nearby structures, it involves 4 or fewer lymph nodes, and it has not spread to other parts of the body (T3 or T4, pN0 or pN1, M0).
Stage III: The tumor is larger than 4 cm or it has invaded nearby structures. Cancer has spread to more than 4 lymph nodes. There is no spread to other parts of the body (T3 or T4, pN2, M0).
Stage IV: Cancer has spread to other parts of the body (any T, any pN, M1).
How Are Head and Neck Cancers Treated?
The course of treatment your medical team will suggest depends on the location of the tumor, the stage of the cancer, your age, and general health. It may include surgery, radiation therapy, chemotherapy, targeted therapy (medications that target a tumor’s specific makeup), immunotherapy (drugs that empower the immune system), or a combination of some or all of these.
If your cancer is HPV-related that will be factored in as well. While research is still ongoing, increasing evidence suggests that HPV-positive tumors have a better prognosis and may require less intense treatment. In fact, the results of three studies are expected to be released in 2020 that may support lower dose treatment for many HPV patients.
The main goal of treatment, naturally, is to eliminate the cancer, but given its location, your doctor will also be focused on preserving the function of the nearby nerves, organs, and tissues that impact how you talk, eat, and breath. You’ll want to have some serious chats before making any decisions about treatment because with these types of cancers you’ve definitely got options. Fortunately, you’ll likely also have plenty of people to ask, since head and neck cancer experts usually work together in teams that include these specialists:
Surgical oncologist: A doctor who treats cancer using an operation.
Medical oncologist: A doctor who treats cancer using medications.
Radiation oncologist: A doctor who specializes in treating cancer using radiation therapy.
Reconstructive/plastic surgeon: A doctor who specializes in surgery to help repair damage caused by cancer treatment.
Maxillofacial prosthodontist: A type of oral surgeon who performs restorative surgery in the head and neck areas, such as replacing parts of the jaw or tongue.
Otolaryngologist: A doctor who specializes in the ear, nose, and throat.
Oncologic dentist or oral oncologist: Dentists experienced in caring for people with head and neck cancer.
Oncology nurse: A nurse who specializes in caring for people with cancer.
If that’s not robust enough for you, depending on your specific situation, your treatment team may also include a physical therapist, speech-language pathologist, audiologist, psychologist or psychiatrist, social worker, and registered dietitian nutritionist.
So what exactly are your treatment options? Let’s get into the real nitty-gritty.
In the past, hard-to-reach head and neck tumors required surgeries lasting 10 to 12 hours and large incisions running from the mouth to the throat. Now, procedures done robotically or via laser microsurgery allow access to and removal of these cancers through the mouth alone. Known as transoral surgeries, these operations last about two hours and patients spend significantly less time in the hospital, experience less pain, recover faster, have fewer side effects, and may be less likely to need radiation and chemotherapy, especially if the cancer was caught early. In addition to removing the tumor and some surrounding healthy tissue (to achieve “clean” or “negative” margins), you may also need:
Lymph node dissection or neck dissection. If the doctor suspects the cancer has spread, nearby lymph nodes may also be removed at the same time as the tumor.
Reconstructive surgery. Sometimes cancer surgery requires removing the jaw, skin, pharynx, voice box, or tongue. In these instances, reconstructive (a.k.a. plastic) surgery may be done to replace the missing tissue and help restore your ability to swallow and speak.
Depending on the location, stage, and type of the cancer, some people may need more than one operation. If it’s not possible to completely remove the cancer, additional treatments, such as chemotherapy and radiation may be necessary to destroy remaining cancer cells.
This treatment uses high-energy rays to kill cancer cells. Like surgery, radiation is considered a local treatment because it affects only the cancerous area of the body. Your doctor may recommend radiation therapy first (to shrink a tumor so it’s easier to remove via surgery), or after surgery to kill any cancer cells that may have missed. Radiation is also sometimes used to ease symptoms or complications caused by the cancer.
The type of radiation you’ll get is known as external beam radiation, or more specifically, a new incarnation known as proton beam radiation. This type of radiation allows your doctor to better control where the bulk of the cancer-fighting energy is released, so higher doses can be given where needed while doing less damage to surrounding healthy tissue and organs. In some more advanced cases, radioactive seeds can be implanted in the body near the cancer, a treatment known as brachytherapy.
Known as chemo for short, this type of treatment uses medications to fight cancer cells. It is considered a systemic treatment because the drugs travel throughout the entire body via the bloodstream. Like radiation, your doctor may recommend chemo to shrink a tumor so it’s easier to remove via surgery, or to kill any cancer cells that surgery may have missed. Chemo may also be used as a palliative treatment to ease symptoms and improve quality of life.
Chemo is also often given to head and neck cancer patients at the same time as radiation because research has shown that together, the two provide a more effective cocktail—the chemo can actually make the radiation work better.
Chemo drugs may be given intravenously over several hours or taken in pill form. These drugs target cells that are rapidly dividing and growing—which is what cancer cells do—but they can also kill normal cells, which is what causes hair loss, nausea, and other side effects. Usually two or more chemo drugs are given together, then the patient gets a break for two to three weeks before another round or “cycle” is given—a process that can last several months.
This newer wave of personalized cancer medications is different from chemo in that it only attacks the specific genes, proteins, and tissue that contribute to the cancer’s growth. To find the most effective treatment, your doctor may run tests to identify the unique characteristics of your tumor, then use that analysis to prescribe a medication that “targets” those factors. Two type of targeted therapies for head and neck cancer include:
EGFR (epidermal growth factor receptor) inhibitors, medications that block the EGFR tumor protein
Vitrakvi (larotrectinib), a drug that targets specific genetic changes found in head and neck cancers
These therapies may have fewer side effects than chemo, or help chemo do its job better when given together, but they don’t work for everyone, insurance may not cover them, and they are expensive. Talk to your doctor—you may be able to participate in a clinical trial that shows promise.
Also called biologic therapy, these medications boost the body’s natural defenses by teaching the immune system to recognize and attack cancer cells. Immunotherapy drugs Keytruda (pembrolizumab) and Opdivo (nivolumab) are options if you have recurrent or metastatic head and neck cancers, or if you haven’t had good results with chemo. As with other treatments, they don’t work for everyone, but can be game changers if they do.
Head and Neck Cancer Treatment Complications
If you like to talk, smile, breathe, smell, and eat (in other words, if you're human), the potential for complications from head and neck cancers can be huge. Some complications are temporary side effects of treatment while others may last a long time or forever. Here’s what you might experience, depending on your cancer and form of treatment:
Decreased thyroid gland function
Difficulty chewing or swallowing, which may require a feeding tube
Facial disfigurement that requires reconstructive surgery
Stiffness or weakness in the shoulder or neck, or an abnormal buildup of fluid (lymphedema), if lymph nodes were removed
Swelling of the mouth and throat area that may make it difficult to breathe and require a temporary tracheotomy, which creates a hole in the windpipe
Temporary or permanent loss of normal voice
Changes in voice due to swelling or scarring
Decreased thyroid gland function
Dry mouth or thickened saliva
Hearing loss or earaches due to a buildup of fluid or earwax and scarring
Loss of appetite due to change in the sense of taste
Short or long-term pain or difficulty swallowing
Temporary side effects during treatment may include redness or skin irritation, bone pain, nausea, fatigue, sore throat, mouth sores
Chemo and Other Drug Complications:
Loss of appetite
Nausea and vomiting
Risk of infection due to lowered immunity
What's Life Like with Head and Neck Cancers?
No doubt about it, a diagnosis of head or neck cancer will change your life. Along with that doozy of a list of potential complications, people treated for head and neck cancers are also at greater risk of developing a new cancer in the head, neck, esophagus or lungs. But try not to let that discourage you.
Millions of people, including Hollywood notables Val Kilmer and Michael Douglas, have done battle with these cancers and come out on the winning end. Remember your village: Doctors, surgeons, mental health experts, social workers, speech-language pathologists, physical therapists, audiologists, and nutritionists are available to help you adapt to your new normal. With the help of modern science and old-fashioned stubbornness, you can put yourself in the best position possible to getting back to the life you want.
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