It is a very aggressive disease with an average survival time of about 10 months
Sadness has been caused by the death of 43-year-old Alexandros Nikolaidis, who passed away after a hard battle with a rare form of cancer, NUT carcinoma.
As he mentioned in his last post, “two years ago, VasNikolaidis, I also got over cancer. With such a rare type of cancer, nut carcinoma, that right now nine out of ten Greek doctors who read it are hearing it for the first time and will rush to look it up.”
What is NUT carcinoma?
NUT carcinoma (NC), also known as midline NUT carcinoma, is a rare type of cancer that can develop anywhere in the body. It is usually found in the head, neck and lungs. It develops from the body’s squamous cells, which are cells that make up the skin and lining of certain organs, such as 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?
The symptoms of NC depend on where the cancer develops in the body. Some general symptoms are:
-Pain
-Unintentional weight loss
-Fatigue
-Cough
-Breathing difficulty
Display
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. A specialist will then study the cells from the sample under the microscope so the doctor can 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 NC diagnosis.
How is NC treated?
Treatment for each patient is 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 see an NC treatment specialist to decide the best approach for your tumor.
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 may be used during surgery. Radiation is aimed at the tumor area to prevent the tumor from growing after it is removed.
-Chemotherapy: When NC tumors are large or cancer cells have spread to other parts of the body, then chemotherapy is used with surgery.
Is NC hereditary?
No, NC is not known to be hereditary
How is NC formed?
We know that in NC, the chromosomes (the parts of your cells that contain all your genes) break and rejoin in the wrong way. This can cause the cells to not work as they should. In NC, a gene called NUT joins another region, usually a region called BRD4. Doctors will look for this change in the chromosomes to confirm that your cancer is NC.
What is the prognosis for someone with NC?
Estimating how a disease will affect you in the long run is called a prognosis. Each person is different and the prognosis will depend on many factors, including:
-Where the tumor is in your body
-If the cancer has spread to other parts of your body
-How much tumor was removed during the operation
If you want information about your prognosis, it’s important to talk to your doctor.
NC is a very aggressive disease and the average survival time is about 10 months. The 2-year survival rate is 30%.
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