Of all the places you’ve worried about getting cancer, it’s safe to say your tonsils probably don’t make the Top 10 list. Yet cases of tonsil cancer are exploding in the U.S.—experts are even calling it an epidemic. What gives? HPV, that’s what. This sexually transmitted virus is responsible for a four-fold increase in tonsil cancers in recent years. If there’s a silver lining, it’s that HPV-related tonsil cancers have a better prognosis than most other head and neck cancers—but still, cancer is cancer. If you or a loved one has been diagnosed, we know you’re worried. Here’s what you need to know about this challenging disease.
First, What Exactly Are Your Tonsils?
Your tonsils are the frontline soldiers of your immune system and the bacteria and viruses you breathe in are the enemy. It’s your tonsils’ job to trap the little buggers, then crank out antibodies from their immune cells to crush the germs before they can travel on to the rest of your body and make you sick.
Let’s take a closer look. You probably didn’t know this, but you actually have three sets of tonsils in your throat:
Pharyngeal tonsils. These are also known as the adenoids, and are located behind the nose in the nasopharynx or upper part of the throat.
Palatine tonsils. This set is located on either side of the back of your throat. These are the ones most visible when you open your mouth, and the ones most likely to develop tonsil cancer.
Lingual tonsils. These are found at the base of the tongue.
These three sets of tonsils form a ring of protection around the throat that runs from your mouth to your nose. There are also more immune system cells along the sides of the throat that can step up if the palatine tonsils or adenoids are removed. Had them taken out when you were a kid? You’re not out of the woods. Tonsil cancer can still occur in the tissue that was left behind.
What Is Tonsil Cancer?
Okay, hang tight, we’re going to use a bunch of medical-ese for a minute. Tonsil cancer is a subset of oropharyngeal cancer, a disease of the pharynx (that’s code for throat) named for its location in your body.
The oropharynx is the middle part of your throat, starting where your mouth (the oral cavity) ends. It includes the soft palate at the back of your mouth, the base of the tongue, and the tonsils. Cancers of the oropharynx are the second most common type of head and neck cancer (mouth cancer is the most common), and the most common place for this type of cancer to form is in the tonsils.
More than 90% of tonsil cancers—and oropharyngeal cancers in general—are what’s called squamous cell carcinomas. These flat cells resemble fish scales and make up the thin layer of tissue lining the interior surfaces of your head and neck. Directly beneath is a layer of moist tissue called the mucosa. If there are abnormal findings in only the squamous layer of cells, it is called carcinoma in situ, meaning these cells are on their way to becoming cancer. If the cancer has traveled beyond this first layer into the deeper tissue, then it is called invasive squamous cell carcinoma.
So What Causes Tonsil Cancer?
Historically, most head and neck cancers were caused by tobacco (used in any form) and alcohol. You already know what tobacco use does: The chemicals and other poisons in tobacco damage the DNA of cells they come in contact with. That DNA is responsible for controlling a cell’s growth; when it’s damaged, cells can start to grow out of control and form a tumor. Using tobacco also weakens the body’s immune system, making it harder to fight off the growing cancer.
Tobacco and alcohol together are an even more lethal combo because alcohol acts as an irritant in the mouth and throat, helping the chemicals in tobacco enter the cells more easily. Alcohol may also slow the body’s ability to break down and get rid of chemicals once they are in your system.
The declining use of tobacco in the U.S. explains why the rate of most head and neck cancers is dropping, too—except for tonsil and other oropharyngeal cancers. Here’s why. Remember, your tonsils’ job is to catch germs and other foreign substances before they enter your body. One of the viruses they’re trained to trap is the human papillomavirus, or HPV, a group of more than 200 viruses which are spread through vaginal, anal, and oral sex. As it turns out, HPV is also a primary cause of tonsil cancer, and in recent years, the incidence of HPV-related head and neck cancers has quadrupled. In total, HPV is now responsible for more than 70% of head and neck cancers, including tonsil cancer.
If there’s any good news to share, it’s that tonsil cancers caused by HPV are proving to be among the most treatable and curable in the head and neck cancer category. That’s especially important for men, who are affected by this type of cancer at least four times more often than women. Some estimates say it could be as high as six or seven times greater for men.
By the way, not all—in fact, not many—of the 200 strains of HPV causes cancer. But 14 strains of this virus are considered “high risk” and two of them—HPV16 and HPV18—cause most cases of HPV-related oropharyngeal cancer. (HPV is responsible for cervical, anal, penile, vaginal, and vulvar cancers as well, but it plays the biggest role in oropharyngeal cancers.) This is likely due to changing sexual habits in recent decades. Research shows that the odds getting HPV-positive throat cancer are double for people who have between one and five lifetime oral sex partners and increases five-fold for those with six or more oral sex partners.
All of this has changed the risk profile for tonsil and oropharyngeal cancers. Patients are now more likely to be:
younger (40 to 55, compared to 60 plus)
a higher socioeconomic status
Then there is the gender issue: While we still don’t have the complete picture of why men are more vulnerable to tonsil cancer, scientific minds are leaning toward the possibility that women have fewer sexual partners than men and develop immunity to HPV more quickly.
Do I Have Tonsil Cancer Symptoms?
There is one telltale symptom of tonsil cancer that shouldn’t be ignored: A swollen tonsil. You notice we did not say tonsils plural—one tonsil is the red flag. If both of your tonsils are swollen, there’s probably something else going on like a bacterial infection.
What else to watch for:
a lump in the neck or throat
a persistent sore throat
a white or red patch on the tonsil
blood-tinged saliva or bleeding from the mouth
difficulty eating or drinking citrus foods
ear or jaw pain
hoarseness or a muffled voice
sores in the back of the mouth or throat that don’t heal
When to Call the Doctor
Two weeks are the magic words for symptoms of tonsil cancer. That’s because most illnesses with similar symptoms won’t last beyond that timeframe, so when they hang around, something else could be going on. See your primary care doc or your dentist, who is trained to look for signs of mouth and throat cancers as part of your checkup. If either of these pros suspect cancer of the tonsils, you’ll need to see a specialist called an otolaryngologist, otherwise known as an ear, nose, and throat (ENT) doctor.
How Is Tonsil Cancer Diagnosed?
Evaluating what’s going on in the back of the mouth and throat is a job best left to a head and neck expert because of the need for specialized equipment for these hard-to-see areas. After a physical exam, the doctor may perform diagnostic tests involving mirrors and cameras. The two options are:
Flexible pharyngo-laryngoscopy: First your doctor will spray your nose with some numbing medication. Then he or she will slowly maneuver a flexible tube with a camera attached through your nose down into your throat. (It’s sounds super-uncomfortable but with the numbing spray you shouldn’t feel much at all.)
Indirect mirror examination: During this test your doctor will place a small mirror in the back of your throat, then ask you to breathe through your mouth and make sounds while examining your throat.
Depending on what your doctor does (or doesn’t find) with these tests, you may experience one or more of the following:
Biopsy: A small piece of suspicious tissue will be removed and examined under a microscope for proof of a malignancy. An in-office direct biopsy may be done with a little numbing medicine if your doctor can easily see the affected area of the tonsil.
Fine needle aspiration biopsy: Another option for easy-to-reach tonsil tumors, during this procedure the doctor places a tiny needle into the mass and draws out some cells for analysis.
Direct laryngoscopy with biopsy: These combined procedures can also be done in an operating room if a better look at the throat is needed. This can involve removing just a piece of the tonsil, or the entire tonsil along with the tumor—known as an excisional biopsy. You can also count on your biopsy sample being tested for the presence of HPV, which is now done for all patients diagnosed with an oropharyngeal cancer.
To help get a complete picture of what’s going on, you will likely undergo some imaging tests as well. These are radiological scans that create pictures of the structures inside your throat. They give your doctor more info about the size of a tumor and can pinpoint evidence of any spread. These may include CT or CAT scans, MRI scans, PET scans, neck ultrasounds, and chest X-rays.
HPV-Related Tonsil Cancer Staging
Once all the diagnostic evidence has been assembled, your cancer will be staged. This is a way of describing the cancer’s location, size, and whether or not it has spread to other parts of the body. The medical community uses a method called TNM, which stands for tumor, node, and metastasis (spread). In the case of tonsil cancer, there are different ways of staging depending on whether your cancer is HPV-related or not.
If your cancer is caused by HPV, your stage will be evaluated depending on whether any lymph nodes were removed during surgery. If they were removed, your cancer will get a pathological staging—stages 1-4 with a small “p” before the “N” (node) ranking. 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. Here’s the breakdown:
Stage I: The tumor is 4 cm or smaller. If cancer has spread to lymph nodes, none of the cancer is larger than 6 cm and it only affects lymph nodes on the same side of the body as the primary tumor. Cancer has not spread to other parts of the body (T0 to T2, N0 or N1, M0).
Stage II: Either the tumor is 4 cm or smaller, has spread to one or more lymph nodes on either side of the body (none is larger than 6 cm), but has not spread to other parts of the body (T0 to T2, N2, M0). Or the tumor is larger than 4 cm, has spread to the epiglottis but not other parts of the body, and none of the lymph nodes have tumors larger than 6 cm. (T3, N0 to N2, M0).
Stage III: Either the tumor is any size, cancer has spread to lymph nodes but not other areas of the body, and it is larger than 6 cm. (any T, N3, M0). Or the tumor has invaded the larynx, tongue muscle, jaw muscles, roof of the mouth, or jawbone, but has not spread to other parts of the body (T4, any N, M0).
Stage IV: Cancer has spread to other parts of the body (any T, any N, M1).
If your tonsil cancer is not caused by HPV, you will still receive a similar staging number, the main differences being the cancer may also be classified as stage 0 (known as carcinoma in situ, with no spread to lymph nodes or other parts of the body) or if it is stage 4, there are multiple possible permutations of how big the tumor is or how far the cancer has spread in the body.
How Is Tonsil Cancer Treated?
This, too, depends on whether your cancer is HPV-related or not. Increasing evidence suggests that HPV cancers can be cured with less intense treatment than cancers caused by tobacco and alcohol. Why? The general consensus is that the cells of a smoker and drinker are more damaged and less capable of repairing themselves.
So while there is no single standard treatment plan for tonsil cancer, in general earlier stage cancers are treated with surgery and possibly radiation. Earlier stage HPV-related cancers may be completely removed during surgery and not require any follow-up treatment.
Later stage tonsil cancers may include a combination of radiation and chemotherapy, rather than surgery which would involve extensive reconstruction and a lesser quality of life afterwards. Let’s zero in on your treatment options.
The advent of transoral surgery for tonsil cancer over the last decade has made this the operation of choice whenever possible. These procedures, done through the mouth, are performed robotically or via laser microsurgery and preserve more of the structures of the mouth and throat. Patients spend less time in the hospital, experience less pain, and recover faster.
However, transoral surgery may not be possible if the tonsil cancer has spread to other nearby sites. In these instances, the main options are a lateral pharyngotomy, which allows the surgeon access through the neck, or a mandibulotomy (surgery that involved splitting the jaw). Surgeries for tonsil cancer may also include a neck dissection—removal of the lymph nodes in the neck—and reconstructive plastic surgery to repair the areas affected by the procedure.
Radiation is often used after surgery to kill any cancer cells that may have been missed. High-energy particles are aimed at the location of the cancer in daily treatments for six or seven weeks. A type of external-beam radiation therapy known as intensity-modulated radiation therapy (IMRT) is usually used because it delivers more effective doses of radiation while reducing side effects and damage to healthy cells.
Some radiation side effects include:
This form of medication is mostly used for more advanced cases that haven’t responded well to other treatment options. Chemo, given intravenously or by pill, targets rapidly growing and dividing cancer cells, but can also kill off normal cells in the process. Two or more chemo drugs may be given together, and the treatment can last several months, with a new round or “cycle” given every two to three weeks. If tonsil cancer is diagnosed at a later stage and surgery is going to be complex and life-altering, concurrent radiation and chemotherapy may be used instead of surgery.
These personalized meds for later stage tonsil cancer attack only the specific genes, proteins, and tissue that contribute to a tumor’s growth, resulting in fewer side effects. One option currently available is Cetuximab (Erbitux), an EGFR (epidermal growth factor receptor) inhibitor that blocks production of the protein that tumors thrive on. The other option is Vitrakvi (larotrectinib), a drug that targets specific genetic changes that can occur in head and neck cancers.
This promising new category of drugs boost the body’s natural defenses by blocking a protein that prevents immune system cells from recognizing and attacking cancer cells. Keytruda (pembrolizumab) and Opdivo (nivolumab) are two immunotherapy drugs that are approved for people with recurrent or metastatic head and neck cancers, or who haven’t had good results with chemo.
The side effects of these meds typically go away when your treatment is completed and may include: Diarrhea, fatigue, flu-like symptoms, hair loss, nausea, and risk of infection.
Living With Tonsil Cancer
It’s scary, it’s stressful, and it’s filled with question marks about your future. A tonsil cancer diagnosis can feel especially personal if the cause is HPV—mixing up the stuff you do for pleasure (i.e. sex) with a deadly disease like cancer is all kinds of messed up, not to mention confusing and upsetting. Still, if your tonsil cancer is HPV-related, it sets you up for potentially a shorter and easier course of treatment, with better recovery odds.
No matter how you ended up with tonsil cancer, know that today’s medications and surgery techniques put you in a far better spot than even five years ago for beating the disease and getting back to your normal life. But don’t wait: The sooner you start treatment, the better your chances in the long run.
Is tonsil cancer curable?
Yes, it’s highly curable when caught early, and especially if the cancer is caused by the HPV virus instead of tobacco and alcohol use. Tonsil cancer is considered “early” if it is Stage 1 or Stage 2, and some Stage 3 cancers if they are small with little to no lymph node involvement. The overall five-year survival rate for HPV tonsil cancers is about 71%, but that drops to 36% for tonsil cancer caused by tobacco and alcohol.
I had my tonsils out—how can I have tonsil cancer?
Strange as it sounds, you can still get tonsil cancer because some of the tonsil tissue usually remains after a tonsillectomy. Remember, too, that you have three sets of tonsils: While cancer is most common in the palatine tonsils, it can occur in the other two types as well. In addition, some research has shown that the risk of base of tongue cancer increases when the palatine tonsils have been removed.
Will I be able to eat normally after tonsil cancer?
In many cases, yes, but it takes time. Eating after surgery can be challenging because the muscles and structures that support swallowing have been weakened. (Side effects of radiation can also contribute to the problem.) A swallowing specialist can teach you exercises that will help. In some instances, a temporary feeding tube may be used while you recover.
I have tonsil stones—is that a risk factor?
Not to worry: Tonsil stones are harmless growths that can form on the inside and outside of the tonsils. The pale yellow or white gravel-size bumps are the result of food particles, saliva, bacteria and cellular debris getting trapped. People with bumpier, crevice-filled tonsils are more likely to develop them than people with smooth tonsils.
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