Category: Cancer

​

If you are reading this, you are a parent or someone who cares for a child or teenager recently diagnosed with cancer. Having a child of any age diagnosed with cancer is an upsetting experience. We would like to provide you with information to help support you through this difficult time.

All feelings are valid

​Hope is an important part of coping. But hope can mean many things. Some parents focus on hope for the day, such as hoping that their child has a good day. Some parents focus on longer-term hope, such as hope that their child will one day be cured. Hope can change during cancer treatment.

Try to find both little and big things to hope for. Focus on keeping that hope by sharing it with your child, family, friends, and your child’s medical care team so that they can share their hopes with you.

​Fear. It is okay to be afraid. Many parents are afraid of what chemotherapy and other cancer treatments will do to their child. Many parents are afraid that their child’s cancer will not be cured. Often parents are afraid of not knowing what will happen today or tomorrow. Cancer treatment can have likely and unlikely effects.

Please let your child’s doctors or nurses know whatever you fear so that they can answer your questions about cancer treatment. This will help you and your child work through and deal with these fears. Talk to your child’s doctor and medical care team about these feelings so that they can address any doubts or questions that arise.

Anger. Often parents feel angry for not being able to do more for their child during this time. Some parents are angry at family, friends, their doctors, or even God for not being able to immediately cure their child’s cancer. Cancer treatment is a long and confusing journey.

Ways to relieve your anger include taking a slow, deep breath, counting slowly to ten, or taking a walk. Try talking to a friend or family member or asking your child’s doctor or medical team for help.

Guilt. Some parents blame themselves for not catching the cancer sooner, or for their child having cancer. Other parents feel guilty for not being able to do more to alleviate their child’s suffering. Cancer is not any person’s fault. The causes of cancer are complicated. Typically, cancer is only detectable when there are enough cancer cells to cause symptoms, so it is hard to find cancer before cancer appears.

Sadness. Sadness is another normal reaction to cancer. Many parents feel sad because cancer has turned their lives upside down. The change from a child who was healthy to a child who needs cancer treatments affects the child, family and friends in different ways. Some parents have feelings of sadness for losing their previous way of living.

Discuss these feelings with your family, friends, your child’s doctor, or even your own doctor. It’s also important that you find ways to take care of yourself so that you can stay strong and support your child through these challenging times.

​Finding balance​

A child’s cancer diagnosis affects the entire family. While caring for your child with cancer is important, you will also need to find ways to balance that care with your job, your spouse, and your other children. This is never easy.

Everyday needs. When family and friends offer to help, take them up on it. Make a list of the kinds of things that would be the most helpful, like making meals for your family, giving rides, or running routine household errands. It might also be helpful to simply sit and listen to your feelings. If friends and family can provide the help you need, please ask your doctor or social worker for resources that can help.

Relationships. Your child’s cancer diagnosis can also put an incredible strain on your relationship with your significant other. Often both parents cannot go to every clinic visit or be together with their child during their hospital stays. It can become difficult to understand what the other parent is going through. This is especially true if one parent is taking on more of the daily caregiving and knows more about things like, how they like to take their medications, which medications to take and when, or even what it is like watching them go through treatment.

Help each other out by writing out questions and instructions on paper, keeping in contact throughout the day, and making important decisions together. Spend time together to talk about things as well as to enjoy each other’s company. Ask your child’s doctor and medical care team to provide information to both of you so you both have the support you need.

Finances. A cancer diagnosis can also be an incredible financial strain. Often a parent will have to leave their job to take care of their child. Financial difficulties can be made worse by the cost of medical care. If you find yourself having financial difficulties do not hesitate to ask your child’s doctor or social worker for help. Your child’s medical team may be able to find financial resources that can help.

​Talk with your child’s doctor if you or your child are feeling unsupported or are confused about anything. Your child’s team–the oncology nurses, social workers, psychologists, child life educators–are all experts trained in caring for children and adolescents with cancer, and can be a great source of comfort and information.​

​When you are up late worrying and researching your child’s diagnosis…

It is normal for parents of children with cancer to search the internet for answers. But it’s important to keep in mind that cancers in children and adolescents are different from adult cancers. You may read about a child with the same cancer as your child, but their experience may be very different. Remember, cancer statistics are based on large numbers of people and cannot say what will happen with your child.

The best way to get information about your child’s cancer is to talk directly with your child’s doctor. Do not be afraid to ask specific questions, such as the chances of your child being cured, or what will be done if your child’s cancer doesn’t get better with initial treatment.

Although not all information found on the internet will be reliable, there are sources we recommend for learning more about your child’s cancer, including the links below.

Childhood cancer is rare. It’s diagnosed in around 150 children per million around the world. In the United States, the majority of children with cancer are cured. Around 80% end up becoming long-term survivors.

While these statistics are encouraging, it’s scary when your child gets a cancer diagnosis​. You’ll probably have plenty of questions. You may wonder if you passed on a genetic mutation to your child. Or maybe you’re concerned about the risk of cancer in your other children or relatives.

Here are answers to common questions about the role of genes in childhood cancer.

If my child has cancer, what is the risk of their siblings or relatives developing cancer?

That depends on several factors:

1. Does your child have what’s called a cancer predisposition syndrome?

These syndromes are caused by inherited gene mutations that increase the risk of developing cancer. Below is a list of some of the types​:

• Li-Fraumeni syndrome
• Neurofibromatosis
• Beckwith-Wiedemann syndrome
• Familial Wilms tumors
• Downs syndrome
• Genetic retinoblastoma
• DNA repair disorders
• Familial adenomatous polyposis syndrome
• Other inherited colon cancer syndromes such as ataxia-telangiectasia

Less than 10% of childhood cancers are known to be related to these predisposition syndromes.

2. What type of cancer has your child has been diagnosed with?

Certain cancers are known to have a higher risk of an inherited genetic mutation. These include:

• Adrenocortical carcinoma (ACC)
• Retinoblastoma
• Optic glioma
• Pheochromocytoma

For example, an estimated 50–80% of patients with ACC, a rare childhood cancer, have inherited a genetic mutation. But less than 5% of childhood leukemias, the most common childhood cancers, have a hereditary component.

3. Does your child’s cancer have an acquired genetic mutation?

A test of your child’s cancer may show an acquired mutation in the cancer cells. This is also known as a somatic mutation. This type of mutation isn’t passed down from parent to child. It develops on its own. In fact, most cancers develop this way.

If testing shows that your child has a somatic mutation, you may be worried that the rest of your child’s normal (non-cancerous) cells have the mutation too. Thankfully, this isn’t the case for most kids.

In a tiny percentage of patients, a somatic mutation may be in the child’s whole body. This is called a germline mutation. Childhood cancer researchers are still trying to figure out how often germline mutations happen. They are also looking into how these mutations affect kids. These researchers are learning new information every day.

Your child’s oncologist can answer your questions about somatic and germline mutations once the testing is complete.

My child’s cancer isn’t because of any known genetic reason. Is the risk of cancer still higher in their siblings or relatives?

This is an important question. Unfortunately, the answer isn’t entirely clear. Some significant studies have shown that there may be an increased risk of certain cancers in close relatives of children with cancer.

One study looked at the risk of cancer in first degree relatives (parents and siblings) of over 13,000 childhood cancer survivors in North America. This study showed that the risk of cancer was increased in siblings of childhood cancer survivors. This risk was not necessarily related to a known inherited cancer predisposition syndrome (see above). Studies done with large numbers of childhood cancer survivors in Australia and the United Kingdom also found similar results.

It’s important to note that the cancers in the child’s relatives were not always the same. They also didn’t necessarily happen during childhood.

Experts don’t fully understand why the risk may be increased for siblings. It’s likely due to multiple factors like environment. There may also be genetic causes that scientists haven’t discovered yet.

If there is a family history of cancer in my family, what is the risk of cancer in my child?

As mentioned earlier, most cancers don’t have an inherited genetic reason. But if your family history ​concerns you, consider these questions:

• Is there a strong family history of a similar or related cancer (such as breast and ovarian) in multiple family members?
• Has this cancer occurred in multiple generations?
• Is there a family history of multiple cancers in some family members?
• Did some or all of these cancers happen to younger family members? For example, is there a family history of breast, ovarian, uterine, or colon cancer at an early age?
• Is there a family history of unusual or rare cancers?

Using this information, you can talk to your pediatrician about your child’s cancer risk. You can also ask about genetic testing and a referral to a genetic specialist or oncologist.

What should I do if know that my family has an inherited genetic predisposition syndrome?

Finding out that there is a family history of a cancer predisposition syndrome can be distressing. Certain syndromes may be suspected based on a physical exam. But they need to be confirmed with genetic testing.

Some syndromes may not have any obvious physical signs. Your child would need genetic testing for these too. However, if the inherited genetic predisposition is for an adult onset cancer, testing in a child is not recommended. Be sure to talk to your child’s pediatrician before you have any testing done.

My child has a cancer predisposition syndrome. What should I do?

If your child has such a syndrome, it’s understandable that you’re worried. Keep in mind that being diagnosed with a cancer predisposition syndrome doesn’t mean that your child will definitely get cancer. It means that the risk of your child developing certain cancers is higher compared to the general population.

Your child’s risk depends on the type of syndrome they have and the cancers that are related to it. The risk also depends on your child’s age, sex, and environmental factors.

For certain syndromes, cancer screening guidelines can be used to help detect the cancers that are related to the syndrome. Your pediatrician, a pediatric oncologist, and a genetic specialist can help guide you through all this.

Remember, less than 10% of cancers have a genetic basis. Most cancers, including childhood cancers, are random. They don’t have any cause that can be identified. This is why there is so much ongoing cancer research. Scientists hope to understand better how and why people develop cancer.

Remember

Your child’s pediatrician, oncologist, and genetic specialist can address your concerns. Don’t be afraid to ask questions. Your child’s health is important to everyone on your healthcare team too.

Childhood and adolescent cancers are rare, and ​​early symptoms may seem like everyday bumps, bruises, and infections. Unlike common childhood illnesses and injuries, however, cancer symptoms don’t get better on their own. Depending on where the cancer cells gather in the body, a child with cancer will show some symptoms that typically get worse over time.

Examples of concerning symptoms to talk with your child’s doctor ab​out:

• an unusual mass or swelling
• unexplained paleness or worsening rash
• loss of energy for no obvious reason
• unusual behavior or movements
• a sudden tendency to bruise or bleed easily
• lasting pain in any part of the body
• unexplained fever that doesn’t go away
• frequent headaches, often with vomiting
• sudden eye or vision changes
• unexpected, rapid weight loss

Keep in mind that a single symptom by itself is less likely to be a sign of childhood cancer. Children who receive a cancer diagnosis usually have many different combinations of symptoms at the same time.  

What to do if your child has some of these symptoms​

​If your child has a combination of these symptoms, or any symptoms that don’t go away and seem to get worse, contact your pediatrician for a thorough evaluation. Depending on the doctor’s findings, blood tests or imaging studies may be helpful. Your pediatrician may also refer you to a pediatric hematology oncology to test for and possibly diagnose cancer.

Rememb​er

Regular check-ups with the pediatrician help keep your child healthy. They also help to ensure any suspicious symptom of childhood cancers are evaluated and treated promptly. Don’t hesitate to talk with your pediatrician about any ongoing or worsening symptoms your child is having.

​​​

Skin cancer is rare in children. However, following safe-sun practices is the best way to protect children from developing skin cancer later in life. For adults, it’s a good idea to get regular skin-cancer screenings beginning as early as their 20s. Most children do not need regular skin exams by a dermatologist to monitor for skin cancer unless they have certain risk factors.

As a parent, here’s what you should know about skin cancer.

Types of skin cancer

Melanoma

Early detection of melanoma is important, since this type of skin cancer can quickly spread to anywhere in the body. It can even develop on sun-protected skin.Melanoma can look like a growing or bleeding pink bump that doesn’t go away. It can also look like a brown mole that is changing in shape, color, size, or feel. (See image at right).

Non-melanoma skin cancer

Children who are immunosuppressed, meaning their body’s defense systems are weakened by certain illnesses, medications, or treatments, are more likely to develop these skin cancers. This may look like a small sore, but will last for more than 8 weeks.

• Basal cell carcinoma: Pearly pink bump, scaly spot, or non-healing sore
• Squamous cell carcinoma: Scaly pink spot, bump, or non-healing sore

Squamous cell carcinoma	Basal cell carcinoma

Identifying a skin cancer

Skin cancers can appear as pink, growing, or bleeding bumps on previously normal skin. It is normal for children and teens to develop new moles over time. New moles should not continue to grow rapidly or change once they appear. Unexplained bumps that don’t go away and non-healing sores that last longer than 8 weeks should be evaluated for skin cancer.

The ABCDE’s of concerning moles or spots

These features can be a sign of melanoma

• Asymmetry: One side of a mole is different than the other side
• Border: Irregular or poorly defined edges
• Color: Multiple colors within one mole, pink or red spots instead of brown, or an existing mole that is changing colors
• Diameter: Larger than ¼ inch (a pencil eraser) increases risk, but some skin cancers are smaller if found early. This is the least important factor. Some birthmarks (congenital moles) may be larger than this, but do not necessarily have a higher risk of skin cancer.
• Evolving: A mole or lesion that looks different from the others, different than it had previously, or is bleeding, itching, or crusting. Moles that are growing rapidly are worrisome. Taking photos can be a helpful way to monitor moles over time.

Risk factors for skin cancer

• Hereditary cancer syndromes
• Genetic syndromes that increase sun sensitivity
• Suppressed immune system: organ or stem cell transplant, chemotherapy or certain medications
• History of skin cancer
• History of radiation therapy​
• History of multiple sunburns
• Family history of melanoma in a parent or sibling
• Medications that make skin easier to damage or burn

Children with these risk factors should talk with their doctor about having a skin exam and consider seeing a dermatologist.

Skin cancer treatment

Many factors are involved with choosing a skin cancer treatment, including type of cancer, size of cancer, and body location. Treatments may include:

• Creams that activate the immune system (imiquimod or 5-fluorouracil)
• Procedures that scrape, burn, or surgically remove the skin cancer
• Oral or intravenous chemotherapy medications
• Combination of the above

Your dermatologist will help determine what type of treatment is best for your child’s skin cancer.

Preventing skin cancer means preventing sun damage

Luckily, most skin cancers are preventable. Early sun exposure and sunburns are an important risk factor for developing skin cancer. There are many ways to protect your child from the radiation from the sun:

• Seek shade. Avoid outdoor activities during midday hours (10am to 2pm) when the sun is the most intense
• Wear a hat with a wide brim that goes all the way around. This protects the scalp, face, ears, and the back of the neck.
• Wear long sleeve shirts, full-length pants and sun-protective clothing with ultraviolet protection factor (UPF)*
• Wear rash guards (swim shirts) at the pool/beach
• Wear sunglasses
• Apply sunscreen ​with S​PF 30 or higher every two hours, more often when swimming or sweating. For children, those containing zinc oxide or titanium dioxide are safe and effective.
• Avoid tanning beds. Rays from tanning beds are even more harmful than those from the sun. Getting a “base tan” is not safe or protective.

​ ​​​

Childhood cancer​ is rare, and more readily diagnosed and treated than ever. With better testing to tell between the specific types of cancers and better cancer treatments available, more than 80% of children and adolescents with cancer will survive.

Signs and symptoms of cancer often mimic other illnesses. Pediatricians concerned about a possible cancer will refer your child to a pediatric oncologist, a doctor who specializes in diagnosing and treating childhood cancers. The specialist will need to get a thorough medical, social, and family history, as well as a physical examination. They may also order different tests to determine the different types of cancers.

What are some common tests used to diagnose cancer?

Below are some of the more common tests used to diagnose cancer in children and teens. Not all of the tests mentioned here are necessary to diagnose every cancer.

Blood tests help look for cancer in the blood or determine the damage to tissues in the body caused by cancer. A sample of blood is obtained by temporarily inserting a sterile needle into a vein of cleaned skin. The sample of blood is sent to special laboratories and results may take several minutes or up to weeks to return. Examples of common blood tests include:

• Complete blood count (CBC) examines the number of red blood cells which carry oxygen to the body, the number and type of white blood cells that fight infection, and the number of platelets that help the blood to clot. Sometimes this test will show leukemia cells, which are cancerous, abnormal white blood cells that do not fight infection.
• Complete metabolic or chemistry panel shows how well the liver and kidney are working and whether there are abnormal chemical substances from cancer cells breaking down.
• Tumor biomarkers are special substances that certain types of cancers secrete into the bloodstream. Different tumor biomarkers help to determine different types of cancers and help determine whether a cancer still exists during or after treatment.
• Urine tests. Urine tests help look for kidney and/or bladder damage from cancer cells or tumor biomarkers, special substances that certain cancers secrete into the urine. A sample of urine is obtained by having a child urinate into a special plastic container or bag. The urine sample is sent to special laboratories and results may take minutes to days to return.

Imaging studies help look for cancer in and around normal tissues in the body. Different kinds of pictures are made from different machines using different techniques to look at different parts of the body. A special technician is needed to take the picture of the cancerous tissue in the affected body part that is held still for a given amount of time. Examples of common imaging studies include:

• Plain radiography or X-rays use ionizing radiation in one direction, for a few seconds like a camera to make a picture of the chest, abdomen, pelvis, and/or bones.
• Ultrasonography or ultrasound use sound waves with a wand placed on moisturized skin, for several minutes, to make a picture of the skin, and soft tissues of the neck, breast, abdomen, and/or pelvis.
• Computerized tomography or CT scans use ionizing radiation from a noisy, donut-shaped machine moving along a child who is lying down for several minutes, to make a three-dimensional picture of any part of the body (brain, head, neck, chest, abdomen, pelvis, spine, arms, and/or legs). Sometimes special dye is injected into the bloodstream before the scan to better tell normal tissue from cancer.
• Magnetic Resonance Imaging or MRI scans use magnetic fields from a noisy, tube-shaped machine in which the child lies still for several minutes, to make a three-dimension picture of any part of the body (brain, head, neck, chest, abdomen, pelvis, spine, arms, and/or legs). Special dye is injected before the MRI scan to better tell normal tissue from cancer.
• Positron Emission Tomography or PET scans require injection of a mildly radioactive special dye into the bloodstream which goes to very actively dividing cells (including cancers). The ionizing radiation is detected by a noisy, donut-shaped scanning machine moving along a child who is lying down still for several minutes. This may be combined with a CT scan to create a three-dimensional picture of the entire body that allows cancer to be better distinguished from normal tissue.
• Bone scans involve injection of a temporary radioactive substance that has charged particles, into the blood stream, which only goes to inflamed, damaged or abnormal bone, which is detected by a special scanning machine that takes a picture of the body and helps to better tell normal bone from cancer.
• Meta-iodobenzylguanidine or MIBG scans require an injection of a temporary radioactive substance into the blood stream, which is only taken up by some cancers involving nerve tissue such as pheochromocytoma and neuroblastoma. This is detected by a special scanner that creates a picture of the body, allowing cancer to be distinguished from normal tissue.

Tumor sampling studies may include:

• Tumor biopsy​. After a child is given anesthesia or sedation, which causes temporary sleep and relieves any pain, a surgeon operates on the part of the child’s body where the tumor is located. After removing the cancerous tissue, the surgeon closes the wound with special stitches called sutures, a gauze dressing is applied, and a child is woken up. Sometimes the cancer tissue can be sampled using a needle. If cancer is present in a lymph node, one of hundreds of glands that provide infection-fighting fluid throughout the body, the abnormal node also can be removed with surgery or sampled with a needle.

The cancer tissue sample or lymph node sample is sent to a pathologist, a doctor who examines the tissue microscopically to determine the specific type of cancer. Other tests may be done that include flow cytometry to look for abnormal protein markers on the surface of cancer cells, or special genetic testing to look for tumor biomarkers and mutations in the DNA that determine the sub-type of cancer.

• Bone marrow aspirate and biopsy tests for cancer in the marrow, the core part of the bone where red blood cells, white blood cells, and platelets are made. The child is given anesthesia and a sterile needle is temporarily inserted into the rear pelvic bone to remove a small sample of the liquid marrow. In addition, a small piece of solid marrow (about the size of an inch-long string) is also removed. After the needle is removed, a gauze dressing is applied to the skin puncture site. The area may feel sore for a day or two.

The bone marrow samples are sent for special microscope testing to look for any cancer cells; cytogenetic testing to look for any abnormal chromosomes found in cancer cells; flow cytometry to look for abnormal protein markers on the surface of cancer cells; and/or special genetic testing with polymerase chain reaction (PCR) and fluorescence in situ hybridization (FISH) to look for abnormal DNA in cancer cells.

• Lumbar puncture tests for cancer in the cerebrospinal fluid, the special liquid around the brain and spinal cord that keeps the central nervous system healthy. The child is given anesthesia and a sterile needle is temporarily inserted into the skin, between the 2 bones of the lower back or lumbar vertebrae into the spinal column where the spinal fluid flows. The spinal fluid drips from the needle into special containers. After the needle is removed, a gauze dressing is applied to the skin puncture site. To avoid a headache, the child lies flat for at least 30 minutes afterwards.

​The cerebrospinal fluid is sent for special microscopic testing to look for cancer cells. It may also be sent for special chemistry testing looking for tumor biomarkers, and/or flow cytometry testing to look for abnormal proteins on the surface of cancer cells.​

Which tests are used for which types of cancers?

Here are four basic categories of cancers which have many cancer sub-types within each category. Different sub-types of cancers require different specialized tests.

Leukemia is the growth of abnormal white blood cells in the bone marrow (soft core of the bones) and bloodstream. Common tests used to diagnose leukemia include:

• Blood tests such as complete blood count and complete metabolic panel
• Bone marrow aspirate and biopsy, and lumbar puncture

Lymphoma is the growth of abnormal white blood cells in the lymph nodes. Common tests used to diagnose lymphoma include:

• Blood tests such complete blood count and complete metabolic panel
• Imaging studies such as X-ray, CT scan, MRI scan and/or PET scan
• Tumor biopsy such as lymph node biopsy, and bone marrow aspirate and biopsy, and lumbar puncture

Brain and spine tumors are the growth of abnormal nerve tissue or abnormal nerve-supporting tissue in the brain and/or spinal cord also known as the central nervous system (CNS). Common tests used to diagnose CNS tumors include:

• Imaging studies such as CT scan, MRI scan, and sometimes Bone scan
• Tumor biopsy by a neurosurgeon (brain surgeon)
• Lumbar puncture

Solid tumors are cancerous growths of abnormal tissues that are not in the bone marrow, lymph nodes, brain or spinal cord. Some examples of different solid tumors include neuroblastoma (cancer of the adrenal gland), Wilms tumor (cancer of the kidney), rhabdomyosarcoma (cancer of the muscle), osteosarcoma (cancer of the bone), Ewing sarcoma (cancer of the bone), hepatoblastoma (cancer of the liver), and germ cell tumor (cancer of the ovaries or testes).

• Blood tests such as complete blood count, complete metabolic panel, and tumor biomarkers
• Urine tests for tumor biomarkers
• Imaging studies such as X-ray, CT scan, MRI scan, PET scan, Bone scan, and/or MIBG scan
• Tumor biopsy such as cancer tissue biopsy, lymph node biopsy, and bone marrow aspirate and biopsy

A diagnosis of cancer is alarming and often unfamiliar for both children and their parents. Fortunately, survival rates for childhood cancer have increased dramatically in recent decades. Today, more than 80% children diagnosed with cancer in the United States who are treated will be cured.

In this article, the American Academy of Pediatrics offers information on some of the common treatment options available. Keep in mind that not all of these treatments are recommended for every cancer type or in every child.

What is a cancer treatment plan?

After diagnosis, a doctor specializing in childhood cancer called a pediatric oncologist will work with the family and other cancer subspecialists to put together a treatment plan or “protocol.”

A child’s cancer treatment plan may include a combination of:

• surgery to remove cancerous tissue
• chemotherapy (also known as drug therapy)
• radiation therapy (high energy X-rays)
• Targeted therapy, such as immunotherapy (proteins that cause the immune system to kill cancer or that target specific cancer genes or proteins)
• hematopoietic stem cell transplantation (strong chemotherapy followed by replacement with new marrow blood cells)

What’s included in a treatment plan depends on the type of cancer, the cancer’s genetics, and where the cancer is located in the body.

Surgery

Surgery may play a role in both cancer diagnosis and treatment, especially for solid tumors and lymphomas (lymph nodes that contain cancer). The surgeon may first take out a piece of the tumor, a procedure called a biopsy, so the tissue can be tested. This can reveal the exact type of cancer.

Surgeons may then remove as much of the cancer as possible before, during, or after other treatments are given that shrink the tumor for the best possible outcomes.

Sometimes surgery can damage the healthy tissue surrounding the tumor. A child may need supportive medication or care to help them heal from the surgery.

What surgery treats

Surgery is often part of treatment for solid tumors in the kidney (such as Wilms tumor), nervous system (such as neuroblastoma), bone, muscle or other soft tissue (types of sarcomas), and brain cancers, for example.

​Childhood cancer treatment & clinical trialsMore than half of children being treated for cancer are enrolled in clinical trials. Clinical trials are research studies that help doctors learn improve cure rates and the quality of life during and after cancer treatment. They’re good for patients, too. Patients in clinical trials get the latest information, testing, procedures, chemotherapy, and other drugs. A pediatric oncologist will go over the risks and benefits of the clinical trial to help families decide if a clinical trial is a good option for their child.

Radiation therapy

Radiation therapy uses high energy X-rays (photons or protons) to kill cancer cells. Radiation is delivered by a machine called a linear accelerator, which sends high energy X-rays directly into the cancer. Radiation is not seen, tasted, or smelled, but the linear accelerator sometimes makes a clicking or humming noise during treatment.

Each radiation treatment can last 10-30 minutes, and may be given daily, for several days a week. Total treatment can last from 1-8 weeks, depending on the type of cancer.

Sometimes radiation can temporarily damage healthy tissue around the tumor being treated. Side effects, which often depend on the type and location of the cancer, may arise two- to three weeks after starting treatment and ast for several weeks. Supportive medications are given to reduce many side effects.

What radiation therapy treats

Radiation therapy may be part of treatment for childhood cancers that develop in soft tissue (rhabdomyosarcoma and sarcoma), the bones (Ewing Sarcoma), eye (retinoblastoma), lymph nodes (Hodgkin lymphoma), and nervous system (neuroblastoma, ependymoma, pontine glioma and astrocytoma), among other types.

Chemotherapy

Chemotherapy (sometimes called “chemo”) is the use of medicines to help kill cancer cells. Chemotherapy can be given in a number of different ways:

• by mouth (orally)
• in the vein (intravenously)
• into a muscle (intramuscularly)
• into the spinal fluid (intrathecally or intraventricularly)
• under the skin (subcutaneously).

Often, a combination of chemotherapy drugs are used together. The length of treatment depends on the type of cancer and how quickly the cancer responds.

As with radiation, sometimes healthy cells in the body are affected, too–especially fast-growing ones like those in the blood, intestines, and hair follicles—but the damage is usually temporary. Each chemotherapy has unique side effects but there are supportive medications available to reduce them.

What chemotherapy treats

Chemotherapy is often part of treatment for most types of cancer that start in the kidney, nervous system, ovaries or testes (germ cells in the ovaries or testes), muscle, bones (Ewing Sarcoma, osteosarcoma), liver (hepatoblastoma), eye (retinoblastoma), blood, lymph nodes (both Hodgkin and Non-Hodgkin lymphoma), immune system (Langerhans cell histiocytosis) and brain.

Hematopoietic stem cell & bone marrow transplant

Stem cell transplants replace diseased or damaged bone marrow cells with healthy stem cells from bone marrow or umbilical cord blood that can make healthy, new mature blood cells. There are two main types of bone marrow transplants used to treat childhood cancers:

Autologous transplant

This type of transplant collects or “harvests” the child’s own stem cells and freezes them for later use. It starts with very high doses of chemotherapy to destroy cancer cells. After chemotherapy, a stimulant protein is given daily to force stem cells out from the bone marrow. The cells are then collected using a special machine in a process called apheresis, which separates blood into its different parts. The frozen stem cells are then thawed and put back or “infused” into the patient’s bloodstream. These healthy stem cells travel to the healthy marrow to grow healthy blood cells.

Allogeneic transplant

This type of transplant collects stem cells from another person, often a brother or sister. If a family donor is not a genetic match, families can look for an unrelated donor through the National Marrow Donor Program. Patients may also receive donated umbilical cord blood.

Before donated stem cells are transplanted, chemotherapy with or without radiation (called conditioning) is used to destroy the patient’s bone marrow. The new donated stem cells are infused into the bloodstream to produce new blood cells.

Since patients are vulnerable to infection and many other side effects during stem cell transplants, they usually need to stay in the hospital for a while. A hospital stay also helps doctors watch closely for any complications, such as the body rejecting the transplanted cells.

What stem cell transplant treats

Stem cell transplant may be used to treat children with high-risk neuroblastoma and certain types of brain tumors, lymphomas, germ cell tumors, and leukemia that have relapsed (returned) after earlier treatment.

Targeted therapy

Targeted therapy, sometimes called molecular therapy or precision medicine, works by targeting and destroying the cancer’s specific mutated (changed) genes, proteins, or surrounding tissue. Targeted therapy may be used in combination with other treatments such as chemotherapy.

Major types of targeted therapy

There are different types of targeted cancer therapies. The two major types include small molecule drugs that work inside cancer cells, and monoclonal antibodies that attach to the outside of cancer cells. Some mark cancer cells so that they are better seen and killed by the immune system. Others kill or stop cancer cells from growing. Still others carry toxins to cancer cells or target a specific genetic defect in the tumor.

Although the hope of targeted therapy is to reduce any side effects to healthy tissue, even targeted therapy has side effects that are manageable with supportive medication and care from the pediatric oncologist.

What targeted therapy treats

Targeted therapy so far has been most successful with some types of leukemia and lymphoma. As research leads to a better understanding of various genetic abnormalities in different types of childhood cancers, others may also be treated with different targeted therapies.

Immunotherapy

Immunotherapy treatment involves using medications to help the body’s own germ-fighting immune system to target and destroy cancer cells. There are different types of immunotherapy that can treat cancer, including:

• Monoclonal antibody treatment, which uses specific antibodies made by the immune system to bind to specific protein markers on tumor cells. This helps the immune system recognize and destroy them.
   
• Immune checkpoint inhibitors are a new class of drug that turn off the protective function of proteins that are produced by cancer cells previously missed in the immune system’s attack.
   
• Adoptive cell therapy, also called T-cell transfer therapy, is when T-cells (a type of lymphocyte or white blood cell) are collected from a patient and grown in a laboratory under conditions that “trains” them to fight cancer cells. Chimeric antigen receptor T cell (CAR T-cell) therapy is the best-known of this type of cell therapy. CAR T-cell therapy has many initial, severe side effects but can be highly effective against relapsed leukemia or lymphoma.
• Cancer vaccines, available in clinical trials, helps the immune system to identify and destroy cancer cells.

As with other types of targeted therapy, immunotherapy also has side effects that can happen during and even after the treatment. Careful monitoring and supportive medical care help to reduce these side effects.

What immunotherapy treats

Immunotherapy may be part of the treatment plan many different types of cancers, including Non-Hodgkin lymphoma, skin cancer (melanoma), high risk or relapsed leukemia, or neurblastoma that has spread to other parts of the body.

Remember

Starting cancer treatment can be a confusing time for patients and their families. Talk with your pediatrician and cancer team if you have any questions about the best treatment plan for your child.

Completing treatment for childhood cancer can bring a range of emotions. In addition to feeling of relief about no more chemotherapy, the child and family may worry that the cancer will return. Adjusting to a new routine with fewer visits to the doctor can also be stressful.

After cancer treatment is completed, your child will continue to be checked by a pediatric oncology doctor at regularly scheduled follow up visits. Here is what to expect during follow-up care, and some common questions families of childhood cancer survivors may have.

What happens at my child’s follow-up visits after cancer treatment?

After the end of cancer treatment, follow-up visits typically include testing to make sure the cancer has not returned. In addition, persistent side effects from cancer treatment are monitored and supportive care given. As more time passes after therapy is completed, follow up visits increasingly focus on monitoring for and treating delayed effects of cancer treatment.

Different cancers require different treatments for cure. Both the type of cancer and its treatment often impact the long-term overall health of the cancer survivor and family. Long-term follow up health care after cancer treatment is highly recommended to monitor for these possible persistent and late onset health issues, so they can be treated accordingly. To help guide health care providers to provide appropriate care for each child, your child will need a cancer treatment summary and survivorship care plan.

What is a cancer treatment summary and survivorship care plan?

A treatment summary is a written, short story about the treatment a child received for cancer. It includes:

• Type of cancer and date of diagnosis
• Title of the treatment protocol used
• Names and dates of surgery, medication doses and/or radiation therapy received
• Reports of the tumor biopsy, special blood or tissue testing, and imaging results
• Side effects or problems experienced
• Supportive or palliative care received, such as counseling or physical therapy
• Names and contact information of your child’s cancer care team

A survivorship care plan is a written follow-up care plan just for your child which includes the treatment summary and the following:

• When to test and how to care for possible long-term and late effects affecting the body
• When and how to get emotional, social, and spiritual support or counseling if needed
• When to test and how to get help for possible learning or school issues
• Information for health insurance and other financial support if needed
• Appointments with other special doctors, educators, and therapists if needed
• Suggestions for healthy behaviors, nutrition (healthy food), and physical exercise

Will my child have any lingering side effects from their cancer treatments?

During the first year after completing cancer treatment, many side effects or problems that happened during treatment will go away or improve. A side effect that does not improve is called a long-term side effect. Some long-term side effects may take months or years to go away. Other side effects may not occur until months or even years after treatment. A side effect that develops months to years after completing cancer treatment is called a late effect.

Some effects are very mild while others cause noticeable health problems. Some children have many long-term or late effects, while others have none or few.

Different cancer treatments can result in different late effects of treatment for childhood cancer. Your child’s survivorship care plan will list the possible long-term or late effects that they may face, and how your doctor may test for these issues.

Types of possible long-term and late effects

Depending on the cancer and cancer treatment possible problems may arise with:

• Certain body parts such as the heart, lung, kidney, or gastrointestinal tract (throat, stomach, intestines, liver, pancreas)
• Certain hormones that control growth, pubertal development, or energy
• The nervous system causing pain, numbness, or tingling in the hands, feet, or other body parts
• Sensory functions resulting in hearing loss, vision changes, dry eyes, or dry mouth
• Recovery of the immune system making it hard to fight infection
• New or second cancers
• Emotions or feelings such as depression or anxiety
• Behavior such as difficulty sleeping or difficulty interacting with friends or family
• Memory, learning (handwriting, spelling, reading, math), or thinking (paying attention, doing work on time, solving problems, planning)

What can I do to help my child?

• To avoid being overwhelmed by possible long-term or late effects, ask your child’s doctor what to expect during your child’s recovery from cancer treatment.
• Knowing what possible symptoms to be aware of and when they may occur can help you care for your child.
• Every year, bring your child’s cancer treatment summary and survivorship care plan to their primary care doctor or survivorship clinic to help provide the best care for your child.

What is a childhood cancer survivorship clinic?

Two years after cancer treatment has ended, your child may be referred to a special childhood cancer survivorship clinic to be checked for any possible long-term and late effects from the treatment. If your hospital does not have such a clinic, ask your child’s doctor to suggest one or find one at the Children’s Oncology Group website, which has a Late Effects Directory of Services​.

At this clinic, you will get a written copy of your child’s cancer treatment summary and a survivorship care plan (see above) that tells doctors what possible problems to look for. These clinics combine the help of special doctors to watch for possible health problems that could continue or occur years after cancer treatment has ended. By finding and caring for these possible problems early, doctors can keep your child healthy.

Children may come to school or child care as cancer survivors, or they may be diagnosed with cancer while enrolled. If children who have cancer are well enough during therapy or between rounds of therapy, they may attend child care or school.

What adaptations may be needed?

Medications

Some children may be on low-dose antibiotics to prevent infection, but they are usually given at home.

Dietary considerations

There usually is no special diet, but children who are recovering from weight loss from chemotherapy may be on high-calorie foods or shakes.

Physical environment

• Good hygiene such as hand washing and avoiding infectious diseases. See Preventing the Spread of Illness in Child Care or School.
• Follow any guidance in the child’s care plan about physical activity, but usually children who are well enough to attend child care or school will be able to participate in most activities.

How teachers can help:

• Schedule a meeting with parents/guardians to go over the specifics of the child’s condition because each case is unique.
• Have the child make a brief visit before the first full day returning to child care or school to meet with his teachers and classmates.
• The child’s care plan will probably need to be updated frequently for a child who is still getting cancer treatments.
• Make sure the child’s care plans are updated after each hospitalization or change in therapy.
• Explain to the other children about the child’s condition, especially if the child’s appearance has changed.
• Children sometimes feel guilty that they somehow caused their condition and may need reassurance that this isn’t so.
• Immediately after chemotherapy or radiation, the child may be more tired or need to rest, but that will resolve over a few weeks.
• The child may have frequent absences for medical tests and treatments. Often child life specialists in the hospital help children adapt and keep up with any lessons they may miss.

Benefits of being with peers: 

Being with groups of children can provide a routine and the chance to interact with friends, which can be a welcome break from a hospital setting.