NUT Carcinoma

Expert Care and Treatment for Thoracic and Lung Cancers

The Thoracic (Lung) Cancer Treatment Center includes thoracic surgeons, radiation oncologists, and medical oncologists who treat patients with various lung cancers and other cancers of organs within the chest.

Your care team will collaborate to develop a comprehensive, personalized treatment plan that offers the most advanced therapies and an array of supportive resources. 

Thoracic (Lung) Cancer Treatment Center

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. 

Personalized Medicine in NUT Carcinoma 

Your NUT carcinoma treatment team will develop a personalized treatment plan based on you and your needs. Our specialists work closely together and collaborate regularly to ensure that your care plan offers the best possible outcomes. We encourage you to be actively involved in the decision-making process. 

Treatment Approaches to NUT Carcinoma 

Your treatment plan may include: 

  • Participation in a clinical trial 
  • Chemotherapy 
  • Surgery 
  • Radiation therapy 
  • Combinations of the above 

The right treatment plan for you depends on many factors, including the size and location of the tumors. 

Clinical Trials Questions?

877-338-7425

Clinical Trials for NUT Carcinoma 

Dana-Farber/Harvard Cancer Center (DF/HCC) offers one of the largest and most active clinical trial programs available, including trials for people with NUT carcinoma. We encourage our patients' participation in clinical trials. For some people with advanced or recurrent cases of NUT carcinoma, taking part in a clinical trial may be the best treatment option. 

NUT carcinoma is an area of active research and DF/HCC is leading the way in developing new treatment approaches. If you qualify for a clinical trial, your doctor and treatment team will discuss all the options and risks associated with clinical trial participation. 

Supportive Resources for NUT Carcinoma 

To address all of your physical and emotional needs, we provide a comprehensive range of support services and integrative therapies. Among our many services, we offer individual and family counseling, physical therapy, pain and symptom management, acupuncture, massage, Reiki, and support groups. 

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

Support NUT Carcinoma Research 

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

  • 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 Jeff Bennett in Dana-Farber's Division of Philanthropy at jeffrey_bennett1@dfci.harvard.edu or 857-215-0384.

Why Choose Us

The Thoracic (Lung) Cancer Treatment Center at Dana-Farber Brigham Cancer Center provides comprehensive services to patients with these cancers, including:  

  • An individualized therapy plan that accounts for your type of cancer and specific needs 
  • Care based on the latest advances in tumor genetic testing, surgical techniques, and other forms of therapy 
  • Access to our Cancer Diagnostic Service, which provides an efficient path to reach a timely diagnosis for patients that present with signs or symptoms of cancer to avoid unnecessary testing and delays in treatment 
  • Access to new therapies through clinical trials
  • Multidisciplinary care delivered by a team of specialists from Dana-Farber Cancer Institute and Brigham and Women’s Hospital 

For Referring Physicians 

If you are a referring physician and have a patient with NUT carcinoma, we look forward to working with you. Find out more about referring a patient.

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