What is NUT carcinoma?

NUT carcinoma is a rare cancer that starts in the lungs or sinuses. Less than 200 cases are diagnosed in the U.S. each year. But it might not be as rare as we think.

“The only way to differentiate NUT carcinoma from lung cancer or sinus cancer is to test for it,” says Ehab Hanna, M.D., a head and neck cancer surgeon who treats NUT carcinoma. “It’s likely we’re missing some cases of it.”

That’s why Hanna has become dedicated to educating other surgeons about this aggressive cancer, and he’s teamed up with head and neck cancer researcher Yoko Takahashi, Ph.D., to determine which methods hold the most promise in treating this rare cancer. We spoke with both doctors to learn more about NUT carcinoma.

What is NUT carcinoma?

NUT carcinoma is also commonly called midline carcinoma because it’s usually found in the middle of the body. About 40% of cases occur within the head and neck – usually the sinus cavity – and another 50% of cases are found in the lungs. The remaining 10% of cases are found in other places in the body.

NUT carcinoma most often occurs in relatively young patients. The average age of NUT carcinoma patients is around 40 years old, and some pediatric cases have even been reported. The cancer is aggressive and spreads quickly.  

What causes NUT carcinoma?

The cancer occurs when the NUTm1 gene mutates, which is why it’s called NUT carcinoma.

“It’s caused by a genetic mutation, but it’s not a hereditary one,” Hanna says. “It can’t be passed on from one generation to the next. No one is quite sure what causes this mutation, but once it happens, it promotes cancer development.”

What are common NUT carcinoma symptoms?

Symptoms depend on where the cancer originates. NUT carcinoma that originates in the sinuses has the same symptoms as other sinus cancers:

• sinus pressure
• nasal blockages and obstruction
• bloody nose
• loss of sense of smell
• impaired vision
• fatigue
• weight loss

NUT carcinoma that starts in the lungs has the same symptoms as other lung cancers:

• cough
• shortness of breath
• fatigue
• weight loss

How is NUT carcinoma diagnosed?

To test for NUT carcinoma, doctors must conduct a biopsy by taking a small sample of a tumor with a needle. Then a pathologist studies the sample under a microscope to determine if it has the trademark genetic mutation that indicates that it’s NUT carcinoma.

“Any cancer that occurs in the midline of the body that can’t be easily classified as a specific cancer type should be tested to determine if it’s NUT carcinoma, but many hospitals don’t have the capability to conduct this test,” Hanna says.

He stresses the importance of seeking a second opinion at a specialized center that treats a high number of sinus cancers to help ensure that patients receive the right diagnosis from the start. In a study Hanna conducted, he found that out of 400 sinus cancer patients at MD Anderson, 30% had their diagnosis corrected after coming here for a second opinion.

“Where you go first matters,” Hanna says. “Accurate diagnosis early on can help save lives.” 

What is the standard treatment for NUT carcinoma?

Unfortunately, there is no standard treatment for NUT carcinoma.

“MD Anderson uses personalized medicine and specific combinations of chemotherapy, surgery and radiation therapy to treat each unique patient,” Hanna says. “As a result, patients treated at MD Anderson typically have a survival rate three times higher than the average.”

How is MD Anderson working to develop new treatments for NUT carcinoma?

Takahashi works in a lab at MD Anderson dedicated to researching head and neck cancers and possible new ways to treat them. She has created a cell line. This is a culture of NUT carcinoma in cells in a Petri dish that allows her to test new therapies.

Takahashi started with a simple sample from a tumor. After about seven days, she could see it was starting to grow. By two months, she had established the cell line. Soon after, she was able to replicate it and create two unique cell lines that are perfectly matched.

“I was so excited. Cell line establishment can be pretty challenging, and many cell lines fail to grow,” she says. “At the same time, this one grew so quickly. It reflected the aggressive nature of this particular cancer.”

These cell lines will allow researchers to study and manipulate the genes found in the tumor, and this could lead to finding potential drugs to treat NUT carcinoma.

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