Living with Nut midline carcinoma
A rare, aggressive cancer of children and young adults that starts in midline parts of the body such as the head, neck, and chest.
Understanding Nut midline carcinoma
It arises from tissue along the body's midline, most often in the head, neck, and chest (mediastinum). It is a poorly differentiated carcinoma, meaning the cells look very different from normal ones. It is marked by changes in the NUT gene. GARD lists onset as a variety of ages.
Signs & symptoms
GARD doesn't list specific symptoms for this condition. It lists these related cancer types and findings:
- Squamous cell carcinoma
- Oropharyngeal squamous cell carcinoma
- Changes in the mediastinum (middle of the chest)
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include cancer specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
NUT Carcinoma Alliance may keep lists of experts for this condition.
Care & treatment
- Care team
- Cancer specialists (oncologists)
- Expert care
- Expert lists: NUT Carcinoma Alliance
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with NUT Carcinoma Alliance
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
The cancer is marked by changes in the NUT gene. A swap between chromosomes 15 and 19, called t(15;19), creates a fusion gene, most often BRD4-NUT.
Also known as: carcinoma with t(15; 19)(q13; p13.1) translocation; midline carcinoma of children and young adults with nut rearrangement; nmc; nuclear protein in testis associated carcinoma
Patient organizations
- NUT Carcinoma AllianceNut midline carcinoma · United States
You are more than your diagnosis
Perspectives from people navigating life with Nut midline carcinoma.
Explore research for Nut midline carcinoma
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- Recruiting studies from ClinicalTrials.gov
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- Eligibility is confirmed by the study team
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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