Pain in children and teens

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A cancer diagnosis does not mean that your child will necessarily have pain. Still, many people with cancer do have pain at some point. Good pain control is part of proper cancer care.

Managing your child's pain may result in better treatment outcomes, so you should talk to your child’s healthcare team about any pain they experience right away.  Treating pain as soon as it starts, or even stopping pain before it begins, is key.  No matter when your child has pain, it’s important to remember that all pain can be treated and most pain can be controlled or relieved.

Left untreated, pain can:

Limit the ability to play, exercise, sleep, and perform everyday tasks
Weaken the immune system, making it harder to heal and fight infection
Reduce appetite
Lead to anxiety and depression

Your child’s doctor should assess their pain and ensure that it's managed throughout their treatment and recovery. Pain management often includes a combination of medications and nondrug options to provide relief. If you're having trouble getting your child’s pain under control, ask to see a pain or palliative (supportive) care specialist. 

Acute and chronic pain

There are two main types of pain: 

Acute pain comes on quickly and lasts a brief time; it can range from mild to severe. This pain is nature’s signal to change a harmful behavior or seek medical attention. Acute pain is due to a known cause, such as damage resulting from surgery or an injury (like a fall). You might need pain medicine to treat acute pain. But once the event is over or the injury has healed, the pain usually goes away.
Chronic pain  doesn’t go away or comes back often. It lasts beyond the usual healing time or more than a few months. Chronic pain can begin suddenly, or slowly become a problem. It may be constant, come and go, or get worse over time. Left untreated, it can suppress the immune system and slow healing.

Breakthrough pain

Breakthrough pain happens even when taking pain medicines on a regular schedule to control chronic pain. In other words, the pain “breaks through” the regular pain management schedule. Breakthrough pain often comes on suddenly and lasts a short time. It may happen several times a day. Many people with chronic pain also have breakthrough pain.

Assessing and managing pain

Pain assessment is an important part of every medical appointment. Talk about any pain your child has so their healthcare team can help manage it. You play the most important role in your child’s pain assessment. Pain cannot be measured like weight, blood pressure, or temperature.

Keeping a record of your child’s pain on a daily or weekly basis can help members of the healthcare team understand the nature and extent of the pain and how to manage it. You can use this pain log to help track their pain. When filling in the “Descriptions of Pain” field, consider the following questions:

Where is the pain? (For example, is it in one location or many?)
How does the pain feel? (For example, is it sharp, dull, burning, or throbbing?)
When does the pain happen? (For example, does the pain occur when standing or moving?)
What activities does it prevent? (For example, does the pain make it hard to shower or dress?)

Accurately telling the healthcare team about your child’s pain will help them work with you to develop a pain management plan. Honest and direct communication with their healthcare provider is important. Be as specific and detailed as you can about your child’s pain.

The healthcare team should assess your child’s pain to ensure it’s managed throughout treatment and recovery. Healthcare professionals often use pain scales to assess patient pain to help determine the best strategy for pain management. For children under 3 years of age or children who are nonverbal, the healthcare team may look for physical or behavioral cues to assess pain. These cues include:

Facial expression
Leg movement and activity such as squirming, jerking or tensing
Crying
Difficulty consoling or comforting the child

The healthcare team may ask older children and teenagers to describe or rate their pain. There are several tools the healthcare team may use that can help children to describe their pain. A tool may include a numerical scale that asks the patients to rate their pain by choosing a number from 0 to 10. A zero means no pain and a 10 means the worst pain they can imagine.

Disease- and treatment-related pain

People with cancer can have pain caused by the cancer itself, its treatment, or both. They may also have pain caused by other health problems that are unrelated to cancer.

Increased pain does not mean that the cancer is getting worse, but you should always tell your healthcare team if your child has increased pain.

It’s important to remember that no matter what the cause, pain can be treated.

Blood cancer-related pain

Many people with blood cancers have pain caused by the cancer itself. For instance, cancer cells can build up in the bone marrow (the spongy tissue inside bones where blood cells are made) and form a mass. That mass may then press on nerves or joints and cause pain. Some of the ways in which specific blood cancers can cause pain are listed below.

Children with leukemia or myelodysplastic syndromes (MDS) have bone or joint pain. This bone pain is most often felt in the long bones of the arms and legs, in the ribs, and in the breastbone. Joint pain and swelling of the large joints, like the hips and shoulders, sometimes starts several weeks after bone pain begins.

Children with leukemia sometimes have pain or feel full below the ribs on their left side. This happens when cancer cells build up in the spleen and cause it to swell (enlarge). The spleen is a small organ in the upper left part of the body under the ribcage. It acts primarily as a filter for your blood.

Children with childhood lymphoma often have swollen lymph nodes. This rarely causes pain at the time of diagnosis. Sometimes, depending on where a mass of abnormal cells forms, a person can have pain in one or more places in the body where the mass is—most commonly in the chest, abdomen (belly), or bones. For instance, a mass in the abdomen can cause back or belly pain. Over time, some people with lymphoma also develop bone pain.

Myeloma is exceptionally rare in children. People with myeloma have pain. Back pain is often the first symptom, but because back pain is so common in our society, it might not be initially linked to myeloma.

Myeloproliferative neoplasms (MPNs) are rare in children. Some people with MPNs have pain. Each MPN disease is different, so people with different types of MPNs can have different kinds of pain.

Pain can also be a side effect of cancer treatment as a result of the toxic side effects of standard drug therapies or radiation therapy used to treat blood cancers.

Chemotherapy can cause painful mouth sores, headaches, muscle aches, and stomach pains. There are treatments that help control these side effects.

Radiation therapy is linked to skin dryness and sunburn-like irritation in the parts of the body exposed to radiation. There are many ways that the side effects of radiation can be managed.

Chemotherapy and, less commonly, radiation therapy can also cause nerve damage. This can lead to pain that tends to start in the hands or the feet and is often described as “burning” or “tingling.” This condition is called “peripheral neuropathy” (PN).

Both chemotherapy and radiation therapy weaken the immune system. This puts the body more at risk for viral infections and diseases. For instance, shingles, the painful blisters on the skin caused by a reactivation of the chickenpox virus, can develop. Shingles can also lead to post-herpetic neuralgia. This is nerve pain that lasts long after the rash and blisters from shingles have gone away. Talk to your child’s doctor about the shingles vaccine.

Learn more about radiation therapy or chemotherapy.

Bone marrow biopsy and bone marrow aspiration can be uncomfortable and sometimes painful procedures. Talk to your healthcare team about getting medicine to help reduce any pain or discomfort your child experiences during or following the procedure. Some children have mild pain for a few days at the place where the needle was inserted.

Learn more about bone marrow tests.

Most of the side effects of stem cell transplantation, including pain, are a result of the high-dose chemotherapy used. Common painful side effects include mouth and throat sores, stomach cramping, vomiting, and diarrhea. There are ways to manage and even help prevent these effects.

Patients will have weakened immune systems for many months after a stem cell transplant. This puts the body at higher risk for viral infections like shingles, which causes painful rashes and nerve pain.

Stem cells for transplantation may be taken from the patient (autologous transplant) or a donor’s bone marrow or blood (allogeneic transplant). People who donate stem cells from bone marrow may experience temporary soreness, bruising, and aching in the hip and lower back following the procedure. People who donate stem cells from the blood receive an injection of growth factor to stimulate the movement of stem cells into the blood. For the donor, the growth factor injection may cause mild, flu-like symptoms, temporary joint pain, bone pain, or headaches.

Learn more about stem cell transplantation. 

Cancer treatment, or sometimes the disease itself, can cause peripheral neuropathy (PN)—damage to nerves of the peripheral nervous system, which transmits information from the brain and spinal cord to every other part of the body.

Peripheral neuropathy can be caused by:

Certain chemotherapeutic agents
Radiation therapy, although it may take several years for symptoms to appear
Shingles, a rash that may develop in people with weakened immune systems
Certain diseases such as myeloma

Learn more about peripheral neuropathy.

Osteonecrosis, also called “avascular necrosis,” is a condition in which there is a reduced blood flow to the bones. This can cause parts of the bones to weaken or die, which can cause pain or even breaks in the bone. Osteonecrosis often affects weight-bearing joints, such as the hip bones and/or knees.

Osteonecrosis is a long-term side effect associated with corticosteroid therapy. This condition seems to have a higher incidence among adolescents than in younger children or adults (likely due to skeletal growth). Your medical team may recommend checking vitamin D and calcium levels if your child is at risk for this condition. If your child is having pain, imaging studies may be indicated or may be performed as part of a clinical trial.

Treatment for pain

Pain can be managed effectively in a number of ways, depending on the cause and type of pain. Do not give your child medications or supplements without first talking to their healthcare team. 

Treatments may include:

Medication: Nonsteroidal anti-inflammatory drugs (NSAIDs), acetaminophen, opioid analgesics, antidepressants, antiepileptics, and steroids
Psychosocial interventions: Stress management, counseling, and coping mechanisms
Rehabilitation techniques: Physical therapy, exercise therapy, and heat/cold therapy
Complementary therapy: Meditation, hypnosis, biofeedback, guided imagery, music therapy, massage, acupressure, acupuncture, reflexology, therapeutic touch, Reiki, yoga, tai chi, qigong (chi gong), herbs, and vitamins

Medications to treat pain

Almost all people find relief from pain by using a combination of medicines. Most pain medicines are pills that are swallowed or dissolve quickly in the mouth.

Some also come in liquid form. If your child is unable to take medicine by mouth, pain medicines can also be given intravenously, rectally (as a suppository), as a shot, or as a cream or patch. Your child’s healthcare team will consult with you and together you’ll decide which medicine they need, how to take it, how much they need (the dose), and how often they should take it. 

Acetaminophen and nonsteroidal anti-inflammatory drugs (NSAIDs): Over-the-counter (OTC) medicines like acetaminophen (Tylenol®) and NSAIDs (Advil® and Aleve®) can work very well for treating mild to moderate pain. These drugs are good pain relievers, but they can be harmful if taken more than the recommended amount. Be sure to follow the package instructions carefully. Some children should not take acetaminophen or NSAIDs, so talk to their healthcare team before administering these medicines. Healthcare professionals do not recommend the use of aspirin for children. Even drugs you can buy without a prescription can be dangerous if not administered correctly.

Opioids: These are medicines that can work very well to treat moderate to severe pain. A written prescription is needed to get these drugs. Be sure to follow the doctor's directions very carefully. There are many types of opioids. Morphine is the opioid that’s most often used to manage cancer pain. Others that are commonly used include: hydromorphone (Dilaudid® or Exalgo®), oxycodone, hydrocodone (Hysingla® or Zohydro ER®), codeine, fentanyl, and methadone.

Some opioids are combined with acetaminophen or an NSAID in one pill. Examples include Percocet® (a combination of oxycodone and acetaminophen), Vicodin® or Norco® (a combination of hydrocodone and acetaminophen), and Vicoprofen® (a combination of hydrocodone and ibuprofen).

Antidepressants and antiepileptics: Antidepressants are medicines most often used to treat depression. Antiepileptics are medicines used to help prevent seizures. Both antidepressants and antiepileptics can also be used to manage pain in people with cancer. They are very good for treating nerve or neuropathy-related pain.

Steroids: These are a type of medicine that can relieve pain caused by swelling or inflammation. Prednisone and dexamethasone are often used to manage pain in people with cancer.

Many times, a combination of medicines is needed to control pain. Your doctor will work with you and your child to find the right combination of treatments to control their pain.

Addiction risk

Some people worry about the risk of addiction when using opioids for pain control. Children with chronic pain who need prolonged opioid therapy and take these medicines as directed have little to no risk of becoming addicted to these drugs. Make sure you and your child understand the instructions for taking this kind of medicine (such as proper dosage and timing) and take only the amount that is prescribed.

Managing a child’s pain medicines

Remember to tell your child’s healthcare provider and other members of their treatment team about all the medicines your child is taking, including over-the-counter drugs, supplements, and herbal remedies. Your healthcare team can provide helpful guidance.

If you’re using medicines to manage your child’s pain, it’s your responsibility to keep all their drugs in a safe place. It’s best if they’re locked up. These drugs should not be within the reach of children, friends, pets, or visitors. They could be stolen if left out in the open, and they can be dangerous if taken incorrectly.

Side effects of pain medication

Many pain medicines have side effects. Talk with your child’s healthcare provider right away about any side effects your child experiences. There are often things you can do to treat and even help prevent them.

Side effects can include:

Some other side effects of opioids to watch for include itchiness, dry mouth, sneezing, sweating, feeling irritable, dizziness, confusion, memory changes, vision changes, and trouble passing urine.

Your healthcare provider will talk with you about the side effects linked to your child’s pain management plan. Be sure you know what to expect, what to do to help with side effects, and when to call the provider.

Other options to control pain

Some other options doctors provide that can help control pain include:

Nerve blocks: injections of anesthetic into the affected area
Nerve ablation: destruction or removal of nerve tissue
Epidural injections: medicine is injected into an area of the spinal cord
Implanted devices, such as:
- Intrathecal pump: a device that delivers pain medication directly into the spinal fluid
- Spinal cord stimulation—a device that sends mild electrical currents to the spine
Surgical procedures, such as:
- Vertebroplasty: chemical cement is inserted into damaged bone or vertebra through a catheter to add strength and improve stability
- Kyphoplasty: a balloon is inserted and then inflated in the vertebra to get it into its normal position before stabilizing the area with chemical cement

Non-drug treatments for pain

While medicines are most commonly used to manage pain, many people with cancer also use non-drug and integrative therapies to find relief. These therapies, especially when used along with pain medicines, can result in better pain relief with fewer side effects. Mind-body practices can help relieve anxiety, sleep disturbances, and mood changes commonly associated with pain. 

It's important for you and your child’s doctor to discuss the type(s) of nondrug approaches that may be most appropriate for your child’s condition. Tell the doctor if you're using any complementary or alternative treatments for your child, as some natural products can change the way their body reacts to prescribed medications.

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