General Information About Childhood Midline Tract Carcinoma
Childhood midline tract carcinoma is a disease in which malignant (cancer) cells form in the respiratory tract or other places along the middle of the body.
The respiratory tract is made up of the nose, throat, larynx, trachea, bronchi, and lungs. Midline tract carcinoma may also form in other places along the middle of the body, such as the thymus, the area between the lungs, the pancreas, liver, and bladder.
NUT carcinoma is a rare type of cancer that forms in the respiratory tract or in other places along the middle of the body, including the thymus, the area between the lungs, and the liver, pancreas, and bladder. It usually grows and spreads quickly and cannot be cured. NUT carcinoma usually occurs in children and young adults.
Midline tract carcinoma is sometimes caused by a change in the NUT gene.
Midline tract carcinoma is caused by a change in a chromosome. Every cell in the body contains DNA (genetic material stored inside chromosomes) that controls how the cell looks and acts. Midline tract carcinoma may form when part of the DNA from chromosome 15 (called the NUTgene) joins with the DNA from another chromosome.
The signs and symptoms of midline tract carcinoma are not the same in every child.
The signs and symptoms of midline tract carcinoma depend on where the cancer formed in the body.
Tests that examine the body are used to help diagnose midline tract carcinoma.
The tests used to diagnose midline tract carcinoma depend on where the cancer formed in the body and may include the following:
Midline tract carcinoma grows and spreads quickly.
Midline tract carcinoma with NUT gene changes is an aggressive cancer that cannot be cured.
Stages of Childhood Midline Tract Carcinoma
The process used to find out if cancer has spread from where it first began to nearby areas or to other parts of the body is called staging. There is no standard staging system for childhood midline tract carcinoma. The results of the tests and procedures done to diagnose midline tract carcinoma are used to help make decisions about treatment.
Childhood midline tract carcinoma may spread to the lymph nodes, the lining around the lung, bone marrow, or bone.
Treatment Option Overview
There are different types of treatment for children with midline tract carcinoma.
Some treatments are standard (the currently used treatment), and some are being tested in clinical trials. A treatment clinical trial is a research study meant to help improve current treatments or obtain information on new treatments for patients with cancer. When clinical trials show that a new treatment is better than the standard treatment, the new treatment may become the standard treatment.
Because cancer in children is rare, taking part in a clinical trial should be considered. Some clinical trials are open only to patients who have not started treatment.
Children with midline tract carcinoma should have their treatment planned by a team of doctors who are experts in treating childhood cancer.
A pediatric oncologist, a doctor who specializes in treating children with cancer, oversees treatment for cancer. The pediatric oncologist works with other health care providers who are experts in treating children with cancer and also specialize in other areas of medicine. Other specialists may include:
- pediatrician
- pediatric surgeon
- radiation oncologist
- pathologist
- pediatric nurse specialist
- social worker
- rehabilitation specialist
- psychologist
- child-life specialist
Three types of treatment are used:
Surgery
Surgery to remove the tumor is one of the main treatments used for childhood midline tract carcinoma.
Radiation therapy
Radiation therapy is a cancer treatment that uses high-energy x-rays or other types of radiation to kill cancer cells or keep them from growing. External radiation therapy uses a machine outside the body to send radiation toward the area of the body with cancer.
Chemotherapy
Chemotherapy is a cancer treatment that uses drugs to stop the growth of cancer cells, either by killing the cells or by stopping them from dividing. When chemotherapy is taken by mouth or injected into a vein or muscle, the drugs enter the bloodstream and can reach cancer cells throughout the body (systemic chemotherapy).
New types of treatment are being tested in clinical trials.
This summary section describes treatments that are being studied in clinical trials. It may not mention every new treatment being studied. Information about clinical trials is available from the NCI website.
Targeted therapy
Targeted therapy is a type of treatment that uses drugs or other substances to identify and attack specific cancer cells. Targeted therapies usually cause less harm to normal cells than chemotherapy or radiation therapy do. New targeted therapy drugs that stop cancer cells from growing are being studied to treat midline tract carcinoma.
Treatment for childhood midline tract carcinoma may cause side effects.
To learn more about side effects that begin during treatment for cancer, visit Side Effects.
Patients may want to think about taking part in a clinical trial.
For some patients, taking part in a clinical trial may be the best treatment choice. Clinical trials are part of the cancer research process. Clinical trials are done to find out if new cancer treatments are safe and effective or better than the standard treatment.
Many of today's standard treatments for cancer are based on earlier clinical trials. Patients who take part in a clinical trial may receive the standard treatment or be among the first to receive a new treatment.
Patients who take part in clinical trials also help improve the way cancer will be treated in the future. Even when clinical trials do not lead to effective new treatments, they often answer important questions and help move research forward.
Patients can enter clinical trials before, during, or after starting their cancer treatment.
Some clinical trials only include patients who have not yet received treatment. Other trials test treatments for patients whose cancer has not gotten better. There are also clinical trials that test new ways to stop cancer from recurring (coming back) or reduce the side effects of cancer treatment.
Clinical trials are taking place in many parts of the country. Information about clinical trials supported by NCI can be found on NCI's clinical trials search webpage. Clinical trials supported by other organizations can be found on the ClinicalTrials.gov website.
Follow-up tests may be needed.
As your child goes through treatment, they will have follow-up tests or check-ups. Some tests that were done to diagnose or stage the cancer may be repeated to see how well the treatment is working. Decisions about whether to continue, change, or stop treatment may be based on the results of these tests.
Some of the tests will continue to be done from time to time after treatment has ended. The results of these tests can show if your child's condition has changed or if the cancer has recurred (come back).
Treatment of Childhood Midline Tract Carcinoma
For information about the treatments listed below, see the Treatment Option Overview section.
There is no standard treatment for newly diagnosed midline tract carcinoma with NUTgene changes. Treatment may include the following:
- Surgery to remove the tumor.
- External radiation therapy.
- Chemotherapy.
Use our clinical trial search to find NCI-supported cancer clinical trials that are accepting patients. You can search for trials based on the type of cancer, the age of the patient, and where the trials are being done. General information about clinical trials is also available.
Treatment of Recurrent Childhood Midline Tract Carcinoma
For information about the treatments listed below, see the Treatment Option Overview section.
Treatment of recurrent midline tract carcinoma with NUTgene changes may include the following:
- A clinical trial that checks a sample of the patient's tumor for certain gene changes. The type of targeted therapy that will be given to the patient depends on the type of gene change.
- A clinical trial that is testing a new group of drugs called BET bromodomain inhibitors in younger patients.
Use our clinical trial search to find NCI-supported cancer clinical trials that are accepting patients. You can search for trials based on the type of cancer, the age of the patient, and where the trials are being done. General information about clinical trials is also available.
To Learn More About Childhood Midline Tract Carcinoma
For more information from the National Cancer Institute about midline tract carcinoma, see the following:
For more childhood cancer information and other general cancer resources, visit:
About This PDQ Summary
About PDQ
Physician Data Query (PDQ) is the National Cancer Institute's (NCI's) comprehensive cancer information database. The PDQ database contains summaries of the latest published information on cancer prevention, detection, genetics, treatment, supportive care, and complementary and alternative medicine. Most summaries come in two versions. The health professional versions have detailed information written in technical language. The patient versions are written in easy-to-understand, nontechnical language. Both versions have cancer information that is accurate and up to date and most versions are also available in Spanish.
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Purpose of This Summary
This PDQ cancer information summary has current information about the treatment of childhood midline tract carcinoma. It is meant to inform and help patients, families, and caregivers. It does not give formal guidelines or recommendations for making decisions about health care.
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Editorial Boards write the PDQ cancer information summaries and keep them up to date. These Boards are made up of experts in cancer treatment and other specialties related to cancer. The summaries are reviewed regularly and changes are made when there is new information. The date on each summary ("Updated") is the date of the most recent change.
The information in this patient summary was taken from the health professional version, which is reviewed regularly and updated as needed, by the PDQ Pediatric Treatment Editorial Board.
Clinical Trial Information
A clinical trial is a study to answer a scientific question, such as whether one treatment is better than another. Trials are based on past studies and what has been learned in the laboratory. Each trial answers certain scientific questions in order to find new and better ways to help cancer patients. During treatment clinical trials, information is collected about the effects of a new treatment and how well it works. If a clinical trial shows that a new treatment is better than one currently being used, the new treatment may become "standard." Patients may want to think about taking part in a clinical trial. Some clinical trials are open only to patients who have not started treatment.
Clinical trials can be found online at NCI's website. For more information, call the Cancer Information Service (CIS), NCI's contact center, at 1-800-4-CANCER (1-800-422-6237).
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PDQ® Pediatric Treatment Editorial Board. PDQ Childhood Midline Tract Carcinoma with NUT Gene Changes Treatment. Bethesda, MD: National Cancer Institute. Updated <MM/DD/YYYY>. Available at: https://www.cancer.gov/types/midline/patient-child-midline-tract-carcinoma-treatment-pdq. Accessed <MM/DD/YYYY>.
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Last Revised: 2021-01-06
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