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MyPART - My Pediatric and Adult Rare Tumor Network
 

NUT Carcinoma

What is NUT carcinoma?

NUT carcinoma (NC), also known as NUT midline carcinoma, is a type of rare cancer that can grow anywhere in the body. Usually, it is found in the head, neck, and lungs. NC grows from the squamous cells in the body, which are cells that make up the skin and lining of some organs, like the lungs and stomach.

NC grows very quickly and can spread to other parts of the body.

How common is NC?

NC is so rare that there is little data on how many people have it. People of all ages can develop NC.

How is NC diagnosed?

Symptoms of NC depend on where the cancer is growing in the body. Some general symptoms are:

  • Pain
  • Unintentional weight loss
  • Fatigue
  • Cough
  • Shortness of breath

Imaging: If you have symptoms of NC, your doctor will use imaging scans such as CT, MRI, and PET to look at where the tumor is and how big it is. They will also check for signs that the tumor has spread to other parts of the body.

Biopsy: To check if the tumor is NC your doctor will do a biopsy, taking a small sample from the tumor with a needle. An expert, called a pathologist, will study cells from the sample under the microscope to see what kind of tumor it is. To diagnose NC, a pathologist will test the cells for a type of protein called NUT. This is very important for diagnosing NC.

How is NC treated?

Treatment for each patient will be unique. NC is so rare that there is no standard treatment for it. NC is also difficult to treat because it grows quickly and can become resistant to treatment. You should go to an expert in NC treatment to decide the best approach for your tumor. You can contact MyPART for help finding experts near you.

Treatment options to discuss with your doctor include:

Surgery: Once NC is diagnosed, you may have surgery to remove the NC. Sometimes surgery is not an option. In this case, your doctor will discuss other options with you.

Radiation therapy: Radiation therapy can be used around the time of surgery. The radiation is aimed at the tumor area to prevent the tumor from growing back after it is removed.

Chemotherapy: When NC tumors are large, or the cancer cells have spread to other parts of the body, then chemotherapy is used with surgery.

Does NC run in families?

No, NC is not known to run in families.

How does NC form?

We know that in NC, chromosomes (the parts of your cells that contain all your genes) break apart and get put back together in the wrong way. This can cause cells to not function like they should. In NC, a gene called NUT joins with another region, usually a region called BRD4. Doctors will look for this change in chromosomes to confirm that your cancer is NC.

What is the prognosis for someone with NC?

The estimate of how a disease will affect you in the long term is called prognosis. Every person is different, and prognosis will depend on many factors, such as:

  • Where the tumor is in your body
  • If the cancer has spread to other parts of your body
  • How much of the tumor was taken out during surgery

If you want information on your prognosis, it is important to talk to your doctor. Also, NCI has resources to help you understand cancer prognosis.

Doctors estimate NC survival rates by how groups of people with NC have done in the past. Because there are so few NC patients, these rates may not be very accurate. NC is a very aggressive disease, and the average length of survival is approximately 10 months. The 2-year survival rate is 30%.