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About NUT Carcinoma

  • What is NUT Carcinoma?

    NUT carcinoma, formerly known as NUT-midline carcinoma (NMC), is a rare and very aggressive form of cancer that can form anywhere in the body, but often forms along the midline structures (head, neck, or lungs). It occurs all over the world in both adults and children of both sexes.

    NUT carcinoma is an undifferentiated or poorly differentiated squamous cell carcinoma, meaning the cancer begins in squamous cells in the body. Squamous cells normally line hollow organs in the body, such as the respiratory tract. It is defined by a specific genetic mutation known as a fusion oncogene. A fusion gene is made by joining parts of two different genes together. In the case of NUT carcinoma, the NUT gene is joined to another gene (usually BRD4, but in some cases BRD3, NSD3, or other genes). This gene fusion causes the abnormal uncontrolled squamous cell growth.

    Cause

    We do not know for certain what causes the NUT fusion oncogene to form. It does not currently appear to be linked to any environmental exposures, such as an infection or contact with a chemical or toxin. NUT carcinoma is also not hereditary, meaning it is not passed down in families. The development of NUT carcinoma seems to be a random, unprovoked event.

    Diagnosis

    The diagnosis of NUT carcinoma requires specific and sensitive immunohistochemistry (IHC) testing, performance of fluorescence in situ hybridization (FISH), or genetic sequencing that can identify the NUT fusion.

    Pathology consultation is available for referring physicians to help with initial diagnosis of NUT carcinoma via the International NUT Midline Carcinoma Registry.

    Incidence

    NUT carcinoma is rare. The exact incidence is currently unknown. Improvements in technology and increased awareness of the disease have led to more accurate identification and diagnosis. Over half of the known cases of NUT carcinoma have been discovered since 2010.

    Symptoms

    General symptoms, such as fatigue and weight loss, may be observed. Other symptoms may also occur, depending on the location of the tumor(s) within the body. These symptoms may include a mass, pain, persistent cough, shortness of breath, or nasal congestion or obstruction.

    Prognosis

    NUT carcinoma is a very aggressive disease that is often resistant to treatment. The median survival time from diagnosis is approximately 6 to 7 months; this means that about half of patients live longer than 6 to 7 months, and half shorter. How advanced the disease is when it is diagnosed, and the location of the disease within the body, plays an important role in prognosis.

    The International NUT Carcinoma Registry

    The International NUT Midline Carcinoma Registry works to collect data on patients with NUT carcinoma. This data is crucial for supporting future research and paving the way for scientific discoveries regarding the diagnosis. Patients of all ages from anywhere in the world may participate. For more information or to enroll, please visit the registry website.

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