Unusual Cancers of Childhood Treatment (PDQ®)–Patient Version
Colorectal Cancer
Colorectal cancer is a disease in which malignant (cancer) cells form in the tissues of the colon or the rectum. The colon is part of the body’s digestive system. The digestive system removes and processes nutrients (vitamins, minerals, carbohydrates, fats, proteins, and water) from foods and helps pass waste material out of the body. The digestive system is made up of the esophagus, stomach, and the small and large intestines. The colon (large bowel) is the first part of the large intestine and is about 5 feet long. Together, the rectum and anal canal make up the last part of the large intestine and are 6-8 inches long. The anal canal ends at the anus (the opening of the large intestine to the outside of the body).
Risk Factors, Signs and Symptoms, and Diagnostic and Staging Tests
Childhood colorectal cancer may be part of an inherited syndrome. Some colorectal cancers in young people are linked to a gene mutation that causes polyps (growths in the mucous membrane that lines the colon) to form that may turn into cancer later.
The risk of colorectal cancer is increased by having certain inherited conditions, such as:
- Attenuated familial adenomatous polyposis.
- Familial adenomatous polyposis (FAP).
- Lynch syndrome.
- Li-Fraumeni syndrome.
- MYH-associated polyposis.
- Turcot syndrome.
- Cowden syndrome.
- Juvenile polyposis syndrome.
- Peutz-Jeghers syndrome.
Colon polyps that form in children who do not have an inherited syndrome are not linked to an increased risk of cancer.
Signs and symptoms of childhood colorectal cancer usually depend on where the tumorforms. Colorectal cancer may cause any of the following signs and symptoms. Check with your child’s doctor if your child has any of the following:
- Tumors of the rectum or lower colon may cause pain in the abdomen, constipation, or diarrhea.
- Tumors in the part of the colon on the left side of the body may cause:
Other conditions that are not colorectal cancer may cause these same signs and symptoms.
Other tests used to diagnose colorectal cancer include the following:
- Colonoscopy : A procedure to look inside the rectum and colon for polyps, abnormalareas, or cancer. A colonoscope is inserted through the rectum into the colon. A colonoscope is a thin, tube-like instrument with a light and a lens for viewing. It may also have a tool to remove polyps or tissue samples, which are checked under a microscope for signs of cancer.
- Barium enema : A series of x-rays of the lower gastrointestinal tract. A liquid that contains barium (a silver-white metallic compound) is put into the rectum. The barium coats the lower gastrointestinal tract and x-rays are taken. This procedure is also called a lower GI series.
- Fecal occult blood test : A test to check stool (solid waste) for blood that can only be seen with a microscope. Small samples of stool are placed on special cards and returned to the doctor or laboratory for testing.
- Complete blood count (CBC): A procedure in which a sample of blood is drawn and checked for the following:
- The number of red blood cells, white blood cells, and platelets.
- The amount of hemoglobin (the protein that carries oxygen) in the red blood cells.
- The portion of the blood sample made up of red blood cells.
- Kidney function test : A test in which blood or urine samples are checked for the amounts of certain substances released by the kidneys. A higher or lower than normal amount of a substance can be a sign that the kidneys are not working the way they should. This is also called a renal function test.
- Liver function test : A blood test to measure the blood levels of certain substances released by the liver. A high or low level of certain substances can be a sign of liver disease.
- Carcinoembryonic antigen (CEA) assay : A test that measures the level of CEA in the blood. CEA is released into the bloodstream from both cancer cells and normal cells. When found in higher than normal amounts, it can be a sign of colorectal cancer or other conditions.
Prognosis
The prognosis (chance of recovery) depends on the following:
- Whether the entire tumor was removed by surgery.
- Whether the cancer has spread to other parts of the body, such as the lymph nodes, liver, pelvis, or ovaries.
Treatment
For information about the treatments listed below, see the Treatment Option Overviewsection.
Treatment of colorectal cancer in children may include the following:
- Surgery to remove the tumor when it has not spread.
- Radiation therapy and chemotherapy for tumors in the rectum or lower colon.
- Combination chemotherapy.
Treatment of recurrent colorectal cancer in children 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.
Children with certain familial colorectal cancer syndromes may be treated with:
- Surgery to remove the colon before cancer forms.
- Medicine to decrease the number of polyps in the colon.
See the following PDQ summaries on adult cancer for more information:
Neuroendocrine Tumors (Carcinoid Tumors)
Neuroendocrine tumors (including carcinoid tumors) usually form in the lining of the stomach or intestines, but they can form in other organs, such as the pancreas, lungs, or liver. These tumors are usually small, slow-growing, and benign (not cancer). Some neuroendocrine tumors are malignant (cancer) and spread to other places in the body. Sometimes neuroendocrine tumors in children form in the appendix (a pouch that sticks out from the first part of the large intestine near the end of the small intestine). The tumor is often found during surgery to remove the appendix.
See the Tracheobronchial tumors section of this summary for information on tracheobronchial carcinoid tumors.
Signs and Symptoms
Some neuroendocrine tumors release hormones and other substances. If the tumor is in the liver, high amounts of these hormones may remain in the body and cause a group of signs and symptoms called carcinoid syndrome. Carcinoid syndrome caused by the hormone somatostatin may cause any of the following signs and symptoms. Check with your child’s doctor if your child has any of the following:
- Redness and a warm feeling in the face and neck.
- A fast heartbeat.
- Trouble breathing.
- Sudden drop in blood pressure (restlessness, confusion, weakness, dizziness, and pale, cool, and clammy skin).
- Diarrhea.
Other conditions that are not neuroendocrine tumors may cause these same signs and symptoms.
Diagnostic and Staging Tests
Tests that check for signs of cancer are used to diagnose and stage neuroendocrine tumors. They may include:
See the General Information section for a description of these tests and procedures.
Other tests used to diagnose neuroendocrine tumors include the following:
- Complete blood count (CBC): A procedure in which a sample of blood is drawn and checked for the following:
- The number of red blood cells, white blood cells, and platelets.
- The amount of hemoglobin (the protein that carries oxygen) in the red blood cells.
- The portion of the blood sample made up of red blood cells.
- Twenty-four-hour urine test: A test in which urine is collected for 24 hours to measure the amounts of certain substances, such as hormones. An unusual (higher or lower than normal) amount of a substance can be a sign of disease in the organ or tissue that makes it. The urine sample is checked to see if it contains a hormone made by carcinoid tumors. This test is used to help diagnose carcinoid syndrome.
- Somatostatin receptor scintigraphy : A type of radionuclide scan that may be used to find tumors. A very small amount of radioactive octreotide (a hormone that attaches to tumors) is injected into a vein and travels through the blood. The radioactive octreotide attaches to the tumor and a special camera that detects radioactivity is used to show where the tumors are in the body. This procedure is also called octreotide scan and SRS.
Prognosis
The prognosis for neuroendocrine tumors in the appendix in children is usually excellent after surgery to remove the tumor. Neuroendocrine tumors that are not in the appendix are usually larger or have spread to other parts of the body at the time of diagnosis and do not respond well to chemotherapy. Larger tumors are more likely to recur (come back).
Treatment
For information about the treatments listed below, see the Treatment Option Overviewsection.
Treatment of neuroendocrine tumors in the appendix in children may include the following:
- Surgery to remove the appendix.
Treatment of neuroendocrine tumors that have spread to the large intestine, pancreas, or stomach is usually surgery. Treatment of tumors that cannot be removed by surgery, multiple tumors, or tumors that have spread may include the following:
- Radioembolization.
- Somatostatin analogue therapy (octreotide or lanreotide).
- Peptide receptor radionuclide therapy.
- Targeted therapy (sunitinib or everolimus).
Treatment of recurrent neuroendocrine tumors in children 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.
See the PDQ summary on adult Gastrointestinal Carcinoid Tumors Treatment for more information.
Gastrointestinal Stromal Tumors
Gastrointestinal stromal cell tumors (GIST) usually begin in cells in the wall of the stomachor intestines. GISTs may be benign (not cancer) or malignant (cancer). Childhood GISTs are more common in girls, and usually appear in the teen years.
Risk Factors and Signs and Symptoms
GISTs in children are not the same as GISTs in adults. Patients should be seen at centers that specialize in the treatment of GISTs and the tumors should be tested for geneticchanges. A small number of children have tumors with genetic changes like those found in adult patients. The risk of GIST is increased by the following genetic disorders:
Most children with GIST have tumors in the stomach and develop anemia caused by bleeding. Signs and symptoms of anemia include the following:
- Feeling tired.
- Dizziness.
- A fast or irregular heartbeat.
- Shortness of breath.
- Pale skin.
A lump in the abdomen or a blockage of the intestine (crampy pain in the abdomen, nausea, vomiting, diarrhea, constipation, and swelling of the abdomen) are also signs of GIST.
Other conditions that are not anemia caused by GIST may cause these same signs and symptoms.
Treatment
For information about the treatments listed below, see the Treatment Option Overviewsection.
Treatment for children who have tumors with genetic changes like those found in adult patients is targeted therapy with a tyrosine kinase inhibitor.
Treatment for children whose tumors do not show genetic changes may include the following:
- Surgery to remove the tumor.
Treatment of recurrent GIST in children 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.
Unusual Cancers of the Reproductive and Urinary Systems
Bladder Cancer
Bladder cancer is a disease in which malignant (cancer) cells form in the tissues of the bladder. The bladder is a hollow organ in the lower part of the abdomen. It is shaped like a small balloon and has a muscle wall that allows it to get bigger or smaller. Tiny tubules in the kidneys filter and clean the blood. They take out waste products and make urine. The urine passes from each kidney through a long tube called a ureter into the bladder. The bladder holds the urine until it passes through the urethra and leaves the body.
The most common type of bladder cancer is transitional cell cancer. Squamous cell and other more aggressive types of bladder cancer are less common.
Risk Factors, Signs and Symptoms, and Diagnostic and Staging Tests
The risk of bladder cancer is increased in females who have been treated for cancer with certain anticancer drugs called alkylating agents.
Bladder cancer may cause any of the following signs and symptoms. Check with your child’s doctor if your child has any of the following:
- Blood in the urine (slightly rusty to bright red in color).
- Frequent urination or feeling the need to urinate without being able to do so.
- Pain during urination.
- Lower back pain.
Other conditions that are not bladder cancer may cause the same signs and symptoms.
- Physical exam and history.
- CT scan.
- Ultrasound of the bladder.
- Biopsy.
See the General Information section for a description of these tests and procedures.
Other tests used to diagnose bladder cancer include the following:
- Urinalysis : A test to check the color of urine and its contents, such as sugar, protein, red blood cells, and white blood cells.
- Urine cytology : A laboratory test in which a sample of urine is checked under a microscope for abnormal cells.
- Cystoscopy : A procedure to look inside the bladder and urethra to check for abnormal areas. A cystoscope is inserted through the urethra into the bladder. A cystoscope is a thin, tube-like instrument with a light and a lens for viewing. It may also have a tool to remove tissue samples, which are checked under a microscope for signs of cancer.
Prognosis
In children, bladder cancer is usually low grade (not likely to spread) and the prognosis is usually excellent after surgery to remove the tumor.
Treatment
For information about the treatments listed below, see the Treatment Option Overviewsection.
Treatment of bladder cancer in children is usually the following:
- Transurethral resection (TUR). This is a surgical procedure to remove tissue from the bladder using a resectoscope inserted into the bladder through the urethra. A resectoscope is a thin, tube-like instrument with a light, a lens for viewing, and a tool to remove tissue and burn away any remaining tumor cells. Tissue samples are checked under a microscope for signs of cancer.
Treatment of recurrent bladder cancer in children 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.
See the PDQ summary on adult Bladder Cancer Treatment for more information.
Testicular Cancer
Testicular cancer is a disease in which malignant (cancer) cells form in the tissues of one or both testicles. The testicles are 2 egg-shaped glands located inside the scrotum (a sac of loose skin that lies directly below the penis). The testicles are held within the scrotum by the spermatic cord, which also contains the vas deferens and vessels and nerves of the testicles.
There are two types of testicular tumors:
- Germ cell tumors: Tumors that start in sperm cells in males. Testicular germ cell tumors may be benign (not cancer) or malignant (cancer). The most common testicular germ cell tumors in young boys are benign teratomas and malignant nonseminomas. Seminomas usually occur in young men and are rare in boys.
- Non-germ cell tumors: Tumors that begin in the tissues that surround and support the testicles. These tumors may be benign or malignant.
Signs and Symptoms and Diagnostic and Staging Tests
Testicular cancer and its spread to other parts of the body may cause any of the following signs and symptoms. Check with your child’s doctor if your child has any of the following:
A painless lump in the testicles may be a sign of a testicular tumor. Other conditions may also cause a lump in the testicles.
- Physical exam and history.
- CT scan.
- Ultrasound.
- Biopsy.
- MRI.
See the General Information section for a description of these tests and procedures.
Other tests used to diagnose testicular tumors include the following:
- Serum tumor marker test : A procedure in which a sample of blood is examined to measure the amounts of certain substances released into the blood by organs, tissues, or tumor cells in the body. Certain substances are linked to specific types of cancer when found in increased levels in the blood. These are called tumor markers. The tumor marker alpha-fetoprotein is used to diagnose germ cell tumors.
Treatment
For information about the treatments listed below, see the Treatment Option Overviewsection.
Treatment of non-germ cell testicular cancer in children may include the following:
- Surgery to remove the tumor.
Treatment of recurrent non-germ cell testicular cancer in children 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.
See the PDQ summary on Childhood Extracranial Germ Cell Tumors Treatment for more information on testicular germ cell tumors.
Ovarian Cancer
Ovarian cancer is a disease in which malignant (cancer) cells form in the ovary. The ovaries are a pair of organs in the female reproductive system. They are located in the pelvis, one on each side of the uterus (the hollow, pear-shaped organ where a fetus grows). Each ovary is about the size and shape of an almond. The ovaries produce eggs and female hormones (chemicals that control the way certain cells or organs function).
Most ovarian tumors in children are benign (not cancer). They occur most often in females aged 15 to 19 years.
There are several types of malignant ovarian tumors:
- Germ cell tumors: Tumors that start in egg cells in females. These are the most common ovarian tumors in girls. (See the PDQ summary on Childhood Extracranial Germ Cell Tumors Treatment for more information on ovarian germ cell tumors.)
- Epithelial tumors: Tumors that start in the tissue covering the ovary. These are the second most common ovarian tumors in girls.
- Stromal tumors: Tumors that begin in stromal cells, which make up tissues that surround and support the ovaries. Juvenile granulosa cell tumors and Sertoli-Leydig cell tumors are two types of stromal tumors.
- Other tumors, such as small cell carcinoma of the ovary (a very rare tumor).
Risk Factors, Signs and Symptoms, and Diagnostic and Staging Tests
The risk of ovarian cancer is increased by having one of the following conditions:
- Ollier disease (a disorder that causes abnormal growth of cartilage at the end of long bones).
- Maffucci syndrome (a disorder that causes abnormal growth of cartilage at the end of long bones and of blood vessels in the skin).
- Peutz-Jeghers syndrome.
- Pleuropulmonary blastoma syndrome (a disorder that may cause cystic nephroma, cysts in the lung, thyroid problems, and other cancers of the kidney, ovary, and soft tissue).
- DICER1 syndrome (a disorder that may cause goiter, polyps in the colon, and tumors of the ovary, cervix, testicle, kidney, brain, eye, and lining of the lung).
Ovarian cancer may cause any of the following signs and symptoms. Check with your child’s doctor if your child has any of the following:
- Pain or swelling in the abdomen.
- A lump in the abdomen.
- Constipation.
- Painful or missing menstrual periods.
- Unusual vaginal bleeding.
- Having male sex traits, such as body hair or a deep voice.
- Early signs of puberty.
Other conditions that are not ovarian cancer may cause these same signs and symptoms.
- Physical exam and history.
- CT scan.
- MRI.
- Ultrasound.
- Biopsy.
See the General Information section for a description of these tests and procedures.
During surgery to remove the tumor, fluid in the abdomen will be checked for signs of cancer.
Prognosis
Ovarian epithelial cancer is usually found at an early stage in children and is easier to treat than in adult patients.
Treatment
For information about the treatments listed below, see the Treatment Option Overviewsection.
Treatment of ovarian epithelial cancer in children may include the following:
Treatment of ovarian stromal tumors in children may include the following:
- Surgery to remove one ovary and one fallopian tube for early cancer.
- Surgery followed by chemotherapy for cancer that is advanced.
- Chemotherapy for cancer that has recurred (come back).
Treatment of recurrent ovarian cancer in children 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.
See the following PDQ summaries for more information:
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