Colorectal cancer survivorship in children

Overview

Colorectal cancer is a type of cancer that starts in the colon or rectum, which are parts of the digestive system. Survivorship means the physical, emotional, and practical care of a child who has completed cancer treatment. For a child, this means not only checking that the cancer has not returned, but also helping them stay healthy and thrive as they grow.

No. Colorectal cancer almost always affects adults, and it is one of the rarest cancers in children. Because it is so uncommon, care is best delivered at a specialized children's cancer center with a team experienced in these situations.

It mainly affects children who have inherited genetic syndromes that raise their colorectal cancer risk, or those with long-standing inflammatory bowel disease (IBD) such as ulcerative colitis. It can also occur in children without these conditions, but this is extremely rare.

Symptoms

Common symptoms

• Blood in the stool (bright red or black and tarry)
• A change in bowel habits, like ongoing constipation or diarrhea
• Belly pain or bloating that does not go away
• Unexplained weight loss or poor appetite
• Feeling very tired for no clear reason

Symptoms in children

• Persistent belly pain or cramping
• Blood in the stool, which may be mistaken for hemorrhoids or fissures
• Change in how often the child uses the bathroom
• Mucus or blood droplets on the toilet paper
• Anemia (low red blood cells) causing fatigue and pale skin
• A feeling of fullness or pressure in the belly

Symptoms in older adults

• Blood in the stool that is visible or found during a routine screening
• Ongoing changes in bowel habits, such as thinner stools, or a feeling that the bowel does not empty completely
• Belly pain, cramping, or gas
• Weakness or fatigue from anemia
• Unexplained weight loss

Causes

Main causes

• Inherited genetic changes (mutations) that cause cells in the colon or rectum to grow out of control
• Long-term inflammation of the colon, as in severe inflammatory bowel disease
• Very rarely, a family history of colorectal cancer combined with no known genetic cause

Risk factors

• A doctor-confirmed diagnosis of familial adenomatous polyposis (FAP)
• Lynch syndrome (hereditary non-polyposis colorectal cancer)
• Other rare inherited conditions like MUTYH-associated polyposis
• A parent or sibling with colorectal cancer, especially at a young age
• Long-standing ulcerative colitis or Crohn's disease of the colon
• Previous abdominal radiation therapy
• A personal history of polyps in the colon or rectum

When to see a doctor

See a doctor urgently if:

• Any amount of blood in the stool, especially if it is dark, tarry, or clots
• Belly pain that interrupts sleep or makes it hard to play
• Vomiting that is forceful or bile-stained
• A belly that is hard, swollen, and tender to touch
• A child older than 12 months who has not passed stool for several days and has belly pain

Book a routine appointment if:

• A child who has persistent diarrhea or constipation lasting more than two weeks
• Unexpected weight loss or a drop in growth percentiles
• A feeling that the bowel is not empty after a bowel movement
• A new, unexplained low blood count (anemia) on a blood test

Diagnosis

If your child has symptoms or a known high-risk genetic condition, the doctor will start with a physical exam, ask about family history, and order blood and stool tests. If they suspect colorectal cancer, the next step is usually a colonoscopy. During a colonoscopy, a thin, flexible camera is inserted through the rectum into the colon to look for tumors, and a small sample (biopsy) may be taken to check for cancer cells.

Tests that may be done

• Physical examination and review of medical and family history
• Stool tests to look for hidden blood
• Blood tests, including full blood count and kidney and liver function
• Colonoscopy with biopsy, done by a pediatric gastroenterologist
• Imaging scans such as MRI or CT scan to see if cancer has spread
• Genetic testing (a blood test) to look for inherited mutations that increase colorectal cancer risk

What to expect at your appointment

If colorectal cancer is confirmed, your care team will talk with you about everything in a clear and caring way. They will avoid giving you all the details at once and will give you time to ask questions. The team will work together to create a personalised plan and will support your family during every step of treatment and recovery.

Treatment

Treatment for colorectal cancer in children is tailored to each child. The main treatment is usually surgery to remove the cancer, and this may be combined with chemotherapy (medicines that kill cancer cells) or radiation therapy (high-energy beams). Because colorectal cancer in children is often linked to inherited conditions, the team will also plan long-term surveillance to look for new growths.

Self-care at home

• Keep a symptom diary to track bowel habits, pain, and energy levels to share with your care team
• Encourage your child to drink plenty of water and eat small, frequent meals if opening the bowels is difficult
• Plan rest around treatment sessions and let your child guide their own activity levels
• Attend every scheduled follow-up appointment and colonoscopy
• Talk openly with your child in an age-appropriate way about their feelings
• Ask for help from a pediatric psychologist or social worker if you or your child feel overwhelmed

Medical treatments

Cancer treatment may include surgery to remove the part of the colon or rectum containing the tumor, chemotherapy (medicine given by mouth or through a vein), and sometimes radiation therapy to shrink a tumor or prevent recurrence. For children with certain inherited types, a doctor may also recommend immunotherapy to help the immune system attack cancer cells. The specific plan depends on the stage and the tumor's features, and the experienced pediatric oncology team will decide which approach offers the best chance for a cure.

When is surgery considered?

Surgery is often the first and most important step. For a child with colorectal cancer, the surgeon removes the tumor along with a margin of healthy tissue. Sometimes the surgeon may need to connect the remaining bowel (anastomosis), and occasionally a temporary or permanent stoma (an opening on the belly for waste to pass) is placed to allow the bowel to heal. The surgical team will explain exactly what is planned before the operation.

Living with this condition

Surviving colorectal cancer in childhood means more than watching for the cancer to return. It means helping your child get back to school, friendships, and activities while making sure they receive regular medical care. Many children feel completely fine between follow-ups, while others need time to adjust physically and emotionally. Your care team will guide you on what to expect at each age.

Lifestyle tips

• Eat a balanced diet with plenty of fruits, vegetables, and whole grains
• Encourage physical activity that your child enjoys, like walking, biking, or sports
• Keep a healthy weight to reduce stress on the body
• Avoid alcohol and keep the child away from tobacco smoke
• Protect the skin with sunscreen and dress appropriately after treatment
• Stay up to date with all recommended vaccinations and check-ups

Diet and exercise

Most children can eat a normal diet after colon surgery, but some may find that certain foods trigger symptoms like bloating or loose stools. A dietitian can help if your child has a stoma or a short bowel. Light to moderate exercise is usually safe, but it is always wise to ask the oncology team about any restrictions, especially after major abdominal surgery.

Mental health and emotional wellbeing

A cancer diagnosis and treatment are emotionally heavy for both a child and the family. Survivors may feel anxious about cancer coming back, especially as they get older and understand more. They may also worry about passing a genetic condition to their own children one day. It is normal to feel a mix of relief, gratitude, and worry. Please talk to a child psychologist, social worker, or mental health professional who specializes in pediatric cancer. If you or your child ever feels in crisis, contact your local mental health crisis line or your emergency phone number immediately.

Prevention

For most children, colorectal cancer cannot be prevented because the risk comes from their genes. However, for children with known high-risk genetic conditions, doctors may recommend early and regular surveillance to find and remove polyps before they become cancer. This can dramatically reduce the chance of developing colorectal cancer.

Screening programmes

Children with a confirmed high-risk syndrome may undergo regular colonoscopy, often beginning in their teenage years or sometimes earlier, depending on the genetic condition. The schedule is personalised: some children need a colonoscopy every one to two years. Your specialist team will explain the plan and adjust it as your child grows.

Complications

If left untreated

• The cancer may spread to other parts of the body, such as the liver or lungs
• A large tumor can block the bowel, causing severe pain and vomiting
• Bleeding from the tumor can lead to severe anemia or require transfusion
• The cancer can cause weight loss and malnutrition because the body cannot absorb nutrients well
• Inflammation around the tumor can cause an infection in the belly (peritonitis)

Long-term outlook

The outlook for a child with colorectal cancer depends on the stage at diagnosis, the tumor's genetic features, and how well it responds to treatment. Because most childhood cases are linked to inherited syndromes, children often need long-term surveillance, but many are cured and go on to become healthy adults. Lives can return close to normal, and your medical team is there to support your family through every stage of this journey. Hope, honesty, and partnership with your doctors are the best tools you have.

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