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About NUT Carcinoma

  • What is NUT Carcinoma?

    NUT carcinoma, formerly known as NUT-midline carcinoma (NMC), is a rare form of cancer that can form anywhere in the body, but often forms along the midline structures (head, neck, or lungs).

    NUT carcinoma is an undifferentiated or poorly differentiated squamous cell cancer, meaning the cancer begins in normal squamous cells in the body. Squamous cells normally line hollow organs, such as the respiratory tract. NUT carcinoma is defined by a specific genetic alteration known as a fusion oncogene. A fusion oncogene 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 formation of abnormally activated NUT proteins that lead to aberrant squamous cell growth.

    Epidemiology of NUT Carcinoma

    NUT carcinoma was first discovered and characterized here in Boston in the early 2000s by members in our group, and is a rare diagnosis; the exact incidence is unknown. Improvements in diagnostic technology and increased awareness of the disease have led to more accurate identification and increased incidence of diagnosis. Over half of the known cases of NUT carcinoma have been discovered since 2010.

    Causes of NUT Carcinoma

    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.

    Symptoms of NUT Carcinoma

    NUT carcinoma often does not have symptoms in its early stages.

    As the cancer grows, symptoms such as fatigue and weight loss may develop. Depending on the location of the tumor(s) within the body, other symptoms may occur. These include a painless lump, pain, persistent cough, shortness of breath, and nasal congestion or obstruction.

    Diagnosis of NUT Carcinoma

    Making an accurate diagnosis of NUT carcinoma is the first step in developing a treatment plan. The diagnosis of NUT carcinoma requires specific and sensitive testing of the tumor biopsy by a pathologist. This includes testing for the NUT fusion protein using specialized techniques called immunohistochemistry (IHC) testing or fluorescence in situ hybridization (FISH) and/or DNA genetic sequencing that can identify the NUT fusion gene.

    Prognosis of NUT Carcinoma

    NUT carcinoma 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, the genetic mutations within the tumor, and the location of the disease within the body play an important role in prognosis. New treatments targeting the molecular underpinnings of NUT carcinoma are being tested in clinical trials. See Our Approach.

    The International NUT Carcinoma Registry

    The International NUT Midline Carcinoma Registry works to collect data on patients with NUT carcinoma. These data are crucial for supporting future research and paving the way for new scientific discoveries that will help us understand the biology of the disease and develop new treatments. Patients of all ages from anywhere in the world may participate. For more information or to enroll, please visit the registry website.

    Support NUT Carcinoma Research

    Your support can help advance research and provide care for individuals with NUT carcinoma, contributing towards:

    • Identifying new biological targets for drugs or interventions against the disease.
    • Evaluating new therapies to treat NUT carcinoma patients.
    • Maintaining a NUT carcinoma tumor tissue bank. Tumor tissue banks give researchers access to tissue for laboratory testing and are critical for the development of new treatment strategies.
    • Increasing advocacy and awareness efforts.
    • Creating an official center for NUT carcinoma, with the potential for naming opportunities.

    Learn how you can support NUT carcinoma research by contacting Carter Brown in Dana-Farber's Division of Philanthropy at or at 857-215-0384.

    NUT Carcinoma – For Physicians

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

    Treatment of NUT Carcinoma: In-person treatment consultation visits are available for patients at Dana-Farber Cancer Institute. See Our Team.