One Millennial's Experience with a Pleomorphic Adenoma
Written by Melissa Schenkman, MPH, MSJ
For Jesse Woon, DMD, looking inside the oral cavity, also known as “the mouth,” to find potential disease is nothing new. He’s been studying the mouth, teeth, gums and all that surrounds them for six years now between seeing patients as a dental student and for two years as periodontal resident. Yet, he never thought that the very area of the body that fascinated him so much so that he chose dentistry for his career path, would be the same one where he would find a tumor of his own.
As it turns out, the round lump Woon noticed on the left side of his cheek right over the angle of his jaw one day was more than just a bump. It was a little-known tumor called a pleomorphic adenoma.
What is a pleomorphic adenoma?
While small in stature, the pleomorphic adenoma is big when it comes to salivary gland tumors. It is known to account for up to ⅔ of all salivary gland tumors and is the most common parotid gland tumor.
The parotid glands are our two largest salivary glands, which are the glands inside your mouth that produce saliva. Our saliva plays an important role in our ability to digest food, and in keeping our teeth healthy and our mouths moist.
So, where exactly do these key glands live? The major salivary glands, including the parotid gland are located under and behind our jaw–the reason the lump Woon felt was on top of his jaw.
It’s when abnormal cells within the salivary glands continue to grow, basically growing out of control, that a pleomorphic adenoma can form.
Pleomorphic adenomas mainly occur in young- and middle-aged adults, who are between 30 and 60 years old, and they occur more often in women than men, making Woon’s experience as a male in his mid-20s even more surprising.
How serious is pleomorphic adenoma?
Fortunately, most parotid gland tumors, like the pleomorphic adenoma, are benign or noncancerous. These types of tumors grow slowly and have little chance of spreading outside the parotid gland or becoming malignant.
In fact, it’s actually very rare for salivary glands to become cancerous. However, the longer a pleomorphic adenoma remains in place, the higher the chance it will become cancerous, according to research from StatPearls, a medical database that is commonly used by doctors, nurses, and other healthcare professionals.
More specifically, 1.5% of pleomorphic adenomas that were not removed, became malignant in the first five years. After 15 years, the number jumped to 9.5% of these parotid gland tumors becoming cancerous.
Also, it’s important to know that sometimes skin cancers, such as squamous cell skin cancer and melanoma, can actually spread to the salivary glands, leading to tumors inside the mouth.
Given how easy it is for a small lump or bump inside our mouths to go unnoticed, especially when we are younger in our 20s, 30s, and early 40s, it’s important to talk about and learn about pleomorphic adenomas for ourselves, friends, and family.
The parotid gland, one of our two largest salivary glands located underneath your check on each side, and where Woon’s pleomorphic adenoma was found.
Pleomorphic adenoma symptoms
The common signs and symptoms of salivary gland tumors, like pleomorphic adenomas, can include:
A lump or swelling on or near your jaw or in your neck or mouth
Numbness in part of your face
Muscle weakness on one side of your face
Trouble opening your mouth widely
Difficulty swallowing
Persistent pain in the area of a salivary gland
For Woon, it was the first symptom on the list above that caught his attention.
“I first noticed my pleomorphic adenoma by sort of feeling this little round bump or lump on the left side of my cheek right over the angle of my jaw. I know that it was there for a while, but I just noticed that it had gotten a little bit bigger, and it wasn’t on my other cheek,” he remembered.
Pleomorphic adenoma diagnosis
When Woon went to his primary care physician for his regularly scheduled physical exam, he told him about this bump he had been feeling inside his mouth on his cheek and how it had grown. To be safe, his doctor sent him to an ear, nose, and throat specialist (ENT) to get checked out.
“When I first saw the ENT, she examined me, did a few tests, asked me about my symptoms, and said, ‘It's most likely one of three types of tumors or growths because of its location and presentation.’ She sent me to go get a CT scan on my head that day, and that was able to sort of locate the tumor,” he said.
Both a CT scan and the biopsy of the bump Woon was also sent for to take a closer look at the bump’s cells, are standard tests performed to investigate suspicious lesions in the parotid gland and diagnose tumors.
In order to reliably make a diagnosis though, the type of biopsy done and that was performed on Woon was a fine needle aspiration.
During the procedure, you are first given medication to numb the area and then using ultrasound guidance your doctor goes into the area and collects a small number of cells and tissue from the tumor. The sample is then looked at under a microscope to see if the cells have certain features or patterns commonly seen in cancerous lesions versus noncancerous ones, and if this is indeed a tumor.
“From there, after all those diagnostic tests and looking at all the data from them, they were able to confirm that, that’s what it was,” Woon told me.
He believes though that a key ingredient to his diagnosis and getting proper treatment was having healthcare providers who took him and his symptoms seriously.
“When I first brought it up to my primary care doctor, he was very careful to not dismiss what I was telling him and to send me to a specialist who probably would have a better sense of what’s going on. And then when I went to the specialist, she seemed to believe right away that it was something, some form of a tumor, and sent me to get the tests for that,” Woon said.
“So, I felt like I was being cared for very well, and that they weren’t dismissing any of my symptoms. But I know that it being dismissed is a common thing that a lot of millennials will face when going to receive some form of health care.”
He reminds us all that he thinks it’s never bad to get a second opinion. Also, he tells us how important it is to always be your own advocate for your health, especially as a younger person–a millennial or member of Gen Z.
“Even if the person you got to first, says that they think it may be one thing, and they’re not totally dismissing you, healthcare providers are all trained in a certain way, and it really depends on where they go. Training is not exactly the same from one school or one institution to another,” Woon said.
“Even though both people may be specialists in the same field, they may be trained to deal with or treat certain conditions in different ways. It is always worth seeking a second opinion if you have any doubts or questions.”
Pleomorphic adenoma treatment
After receiving his diagnosis, Woon was scheduled for surgery of his left parotid gland, which is where the tumor was located. These types of tumors can occur in other salivary glands as well, but this was the specific location of his.
Since pleomorphic adenomas are noncancerous the main treatment is to surgically remove it in a procedure called a parotidectomy, so that it does not continue to grow and become cancerous. It’s an outpatient procedure that is performed by a head and neck surgeon, and patients can go home the same day.
Depending on the tumor’s size, either a portion of the salivary gland will be removed if the tumor is small or the entire salivary gland its effecting will be removed.
The surgery can be difficult because the salivary glands are surrounded by some very important nerves, including the facial nerve, which controls the muscles of the face to create facial expression and sensation of touch to the face. This is why it is very important to choose a skilled head and neck surgeon to perform the surgery.
Risks and potential complications of a parotidectomy include:
Facial nerve injury
Bleeding
Infection
Scarring
Salivary fistula (when saliva leaks through the incision; this is usually temporary)
Sialocele (a cavity or cyst containing saliva)
Frey’s syndrome (a rare complication of parotid gland surgery that causes sweating or flushing in an area of the face when eating, especially spicy, salty or sour foods)
Seroma (a pocket of serum that forms near the surgical incision
Patients may have to have a drain in the incision for a day to prevent the buildup of blood and fluid in the face or neck.
Woon and his wife Jessica, a high-risk labor and delivery nurse at Duke, enjoying a UNC basketball game.
Living with a pleomorphic adenoma
After having the tumor surgically removed without experiencing any complications from the surgery, you are looking at about a one- or two-week recovery where you have to keep the incision clean and dry, and you cannot lift anything that is heavy. Beyond that though, there are no long-term complications.
However, it’s important to follow up with your doctor periodically to make sure a new tumor does not grow and is unnoticed. This follow-up and keeping watch on your own will provide peace of mind in helping you cope with any anxiety having lived with a pleomorphic adenoma caused you.
“When I first had all this done, I hadn’t really received any kind of formal healthcare education. I actually learned in dental school that there is a pretty small recurrence rate with the tumor that I had specifically,” Woon recalled. “I do not remember whether my surgeon told me that I should ever follow up on this but knowing that a recurrence rate is still there, I think I will try to go seek a little bit more care soon just to know if I should be doing anything else to follow up.”
According to a systematic review–a study analyzing the findings of a combination of more than 20 research papers about pleomorphic adenomas–the risk of recurrence of a pleomorphic adenoma is typically associated with having a surgery that did not fully remove the tumor. And as Woon found on his own, it's a small risk of recurrence.
How small? The risk of a person developing a pleomorphic adenoma a second time after undergoing the standard treatment of parotidectomy is less than 2-3%. But since there is still a risk, the combined study also recommends long-term follow up.
Takeaways
The next time you are brushing and hopefully also flossing your teeth, as you take a closer look in your mouth, here’s what you should remember about pleomorphic adenomas before any bump you might feel causes you alarm:
Pleomorphic adenomas are benign (noncancerous) tumors of the salivary glands. The glands in your mouth that produce saliva.
They are the most common form of salivary gland tumors.
Pleomorphic adenomas typically appear as an area of swelling near your jaw, cheek, or neck that are not painful.
These tumors have both a very low risk of becoming cancerous and of recurrence once removed.
The diagnosis involves a trip to visit a specialist, a CT scan, and a fine needle aspiration.
If you do feel a swelling that is not normally there for you in one of the areas mentioned above and it does not go away, make a doctor’s appointment and get it checked out.
“Pleomorphic adenomas typically don’t occur in people as young as I was when I first noticed mine, so just because your symptoms or presentation might not be classic to what you might read or learn about, it doesn’t mean it can’t be something else,” Woon said. “It’s always worth getting an opinion and seeking an evaluation.”
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