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Retinoblastoma - Childhood - Introduction

Approved by the Cancer.Net Editorial Board, 04/2020

ON THIS PAGE: You will find some basic information about retinoblastoma and the parts of the body it may affect. This is the first page of Cancer.Net’s Guide to Childhood Retinoblastoma. Use the menu to see other pages. Think of that menu as a roadmap for this complete guide.

Cancer begins when healthy cells change and grow out of control, forming a mass called a tumor. A tumor can be cancerous or benign. A cancerous tumor is malignant, meaning it can spread to other parts of the body. A benign tumor means the tumor can grow but will not spread.

Retinoblastoma is a rare cancer that begins in the part of the eye called the retina. The retina is a thin layer of nerve tissue that coats the back of the eye and enables the eye to see. Most often, retinoblastoma is unilateral, meaning it occurs only in 1 eye. However, it may be present in both eyes, called bilateral. If retinoblastoma spreads, it can spread to the lymph nodes, bones, or the bone marrow, which is the soft, spongy-like material found inside large bones. Rarely, it involves the central nervous system (CNS; brain and spinal cord).

Children may be born with retinoblastoma, but the disease is rarely diagnosed at birth. Most children who begin treatment before the retinoblastoma has spread beyond the eye are cured. Most children can be cured, and an important goal of treatment in children with retinoblastoma is preserving vision.

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If you would like more of an introduction, explore these related items. Please note that these links will take you to other sections on Cancer.Net:

The next section in this guide is StatisticsIt helps explain the number of children who are diagnosed with retinoblastoma and general survival rates. Use the menu to choose a different section to read in this guide.

Retinoblastoma - Childhood - Statistics

Approved by the Cancer.Net Editorial Board, 04/2020

ON THIS PAGE: You will find information about the number of children who are diagnosed with retinoblastoma each year. You will also read general information on surviving the disease. Remember, survival rates depend on several factors. Use the menu to see other pages.

Retinoblastoma makes up 2% of all cancers diagnosed in children before the age of 15. It is the most common eye cancer in children. An estimated 200 to 300 children in the United States will be diagnosed annually with the disease.

Most children who are diagnosed with retinoblastoma are younger than 5 years old. The average age of diagnosis is 2. Girls and boys are diagnosed at equal rates, as are different races and ethnicities. Generally, 3 out of 4 children with retinoblastoma have the disease in 1 eye. The disease is found equally in the left eye and right eye. About 25% of children with retinoblastoma have the disease in both eyes.

The 5-year survival rate tells you what percent of children live at least 5 years after the cancer is found. Percent means how many out of 100. The 5-year survival rate for children with retinoblastoma is 96%. However, that rate depends on several factors, including whether the cancer has spread from the eye to other parts of the body.

It is important to remember that statistics on the survival rates for children with retinoblastoma are an estimate. The estimate comes from annual data based on children with this cancer in the United States. Also, experts measure the survival statistics every 5 years. So the estimate may not show the results of better diagnosis or treatment available for less than 5 years. Talk with your child’s doctor if you have any questions about this information. Learn more about understanding statistics.

Statistics adapted from the American Cancer Society's (ACS) publication, Cancer Facts & Figures 2020, and the ACS website (January 2020).

The next section in this guide is Medical IllustrationsIt offers drawings of body parts often affected by retinoblastoma. Use the menu to choose a different section to read in this guide.

Retinoblastoma - Childhood - Risk Factors

Approved by the Cancer.Net Editorial Board, 04/2020

ON THIS PAGE: You will find out more about the factors that increase the chance of developing retinoblastoma. Use the menu to see other pages.

A risk factor is anything that increases a person’s chance of developing cancer. Although risk factors often influence the development of cancer, most do not directly cause cancer. Some people with several risk factors never develop cancer, while others with no known risk factors do.

Currently, the only known cause of retinoblastoma is a genetic mutation or change. This genetic form of retinoblastoma accounts for about 40% of cases and always occurs in very young children, typically 1 year old or younger. When retinoblastoma affects both eyes, it is always a genetic condition. Despite the genetic link, only 10% to 15% of children with retinoblastoma have a family history of the disease. Rarely, the genetic form occurs in only 1 eye.

Children who have had bilateral retinoblastoma or the hereditary form of unilateral retinoblastoma are at increased risk for developing other types of cancer. The risk of an additional tumor is higher for children who receive radiation therapy to the orbit (eye socket) to preserve vision or to other parts of the body where the tumor has spread. If a newborn child has a family history of retinoblastoma, the baby should be examined shortly after birth by an ophthalmologist who is experienced in treating cancers of the eye. An ophthalmologist is a medical doctor who specializes in eye care.

About 60% of children with retinoblastoma do not have the genetic form. They develop a single tumor in only 1 eye, and they have no increased risk of an additional tumor later in life.

The next section in this guide is Symptoms and Signs. It explains what body changes or medical problems retinoblastoma can cause. Use the menu to choose a different section to read in this guide.

Retinoblastoma - Childhood - Symptoms and Signs

Approved by the Cancer.Net Editorial Board, 04/2020

ON THIS PAGE: You will find out more about body changes and other things that can signal a problem that may need medical care. Use the menu to see other pages.

Children with retinoblastoma often experience the following symptoms or signs. Sometimes, children with retinoblastoma do not have any of these changes. Or, the cause of a symptom may be a different medical condition that is not cancer. Sometimes, a doctor finds retinoblastoma during a well-baby examination. Most often, however, parents notice symptoms or signs such as:

  • A pupil that looks white, instead of the normal black

  • A crossed eye, which is an eye looking either toward the ear or toward the nose

  • Poor vision

  • A red, painful-looking eye

  • An enlarged pupil

  • Different-colored irises

If you are concerned about any changes you notice, please talk with your child’s doctor. Your child's doctor will ask how long and how often your child has been experiencing the symptom(s), in addition to other questions. This is to help figure out the cause of the problem, called a diagnosis.

If cancer is diagnosed, relieving symptoms remains an important part of your child’s cancer care and treatment. This may be called palliative care or supportive care. It is often started soon after diagnosis and continued throughout treatment. Be sure to talk with your child's health care team about the symptoms your child experiences, including any new symptoms or a change in symptoms.

The next section in this guide is Diagnosis. It explains what tests may be needed to learn more about the cause of the symptoms. Use the menu to choose a different section to read in this guide.

Retinoblastoma - Childhood - Diagnosis

Approved by the Cancer.Net Editorial Board, 04/2020

ON THIS PAGE: You will find a list of common tests, procedures, and scans that doctors use to find the cause of the medical problem. Use the menu to see other pages.

Doctors use many tests to find, or diagnose, cancer. They also do tests to learn if cancer has spread to another part of the body from where it started. If this happens, it is called metastasis. For example, imaging tests can show if the cancer has spread. Imaging tests show pictures of the inside of the body. Doctors may also do tests to learn which treatments could work best.

For most types of cancer, a biopsy is the only sure way for the doctor to know if an area of the body has cancer. In a biopsy, the doctor takes a small sample of tissue for testing in a laboratory. However, the diagnosis process is different for retinoblastoma. A diagnosis for retinoblastoma is never made by a biopsy when the tumor is confined to the eye or eyes. The diagnosis of retinoblastoma is made after a detailed examination of the affected eye or eyes by an experienced ophthalmologist. 

This section describes options for diagnosing retinoblastoma. Not all tests listed below will be used for every person. Your child's doctor may consider these factors when choosing a diagnostic test:

  • The type of cancer suspected

  • Your child's signs and symptoms

  • Your child's age and general health

  • The results of earlier medical tests

The next step after observing any symptoms (see Symptoms and Signs) is to have the child examined by a specialist, who will do a thorough ophthalmic examination to check the retina for a tumor. Depending on the child’s age, either a local or general anesthetic is used during the eye examination. Anesthetic is a medication that blocks the awareness of pain.

The specialist will make a drawing or take a photograph of the tumor in the eye to provide a record for future examinations and treatment. Additional tests may also be done to locate or confirm the presence of a tumor.

In addition to a physical examination, the following tests may be used to diagnose retinoblastoma:

  • Ultrasound. An ultrasound uses sound waves to create pictures of the internal organs. A transmitter that emits sound waves is moved over the child’s body. A tumor generates different echoes of the sound waves than normal tissue does, so when the waves are bounced back to a computer and changed into images, the doctor can locate a mass inside the body. The procedure is painless.

  • Computed tomography (CT or CAT) scan. A CT scan takes pictures of the inside of the body using x-rays taken from different angles. A computer combines these pictures into a detailed, 3-dimensional image that shows any abnormalities or tumors. A CT scan can be used to measure the tumor’s size or help the doctor find cancer outside of the eye. Sometimes, a special dye called a contrast medium is given before the scan to provide better detail on the image. This dye can be injected into a patient’s vein or given as a pill or liquid to swallow. CT scans are used less commonly in diagnosing retinoblastoma because of the concern raised by the radiation associated with this type of scan. 

  • Magnetic resonance imaging (MRI). An MRI uses magnetic fields, not x-rays, to produce detailed images of the brain and spinal column. MRI can also be used to measure the tumor’s size. A special dye called a contrast medium is given before the scan to create a clearer picture. This dye can be injected into a patient’s vein or given as a pill or liquid to swallow. An MRI is increasingly recommended because it avoids the radiation associated with CT scans and better shows the structures of the eye, orbit, and brain.

  • MRI or CT scan of the brain. These tests may be recommended to find out if there is an abnormality of the pineal gland, which is a small gland in the brain that regulates the body’s response to light. It is recommended that these scans be performed once every 6 months until age 5 for children with the genetic form of retinoblastoma, which includes those with bilateral disease and those with unilateral disease who have a family history of the disease. Very young children with a tumor in 1 eye who do not have a family history of the disease may also be at risk, and these tests may be recommended. Scans may also be recommended years after treatment for children who have received external-beam radiation therapy (see Types of Treatment), either as a baseline in case of problems in the future, or to determine the cause of a new symptom or sign of a problem.

If there are any additional signs found during the physical examination, the doctor may recommend more tests to determine if the cancer has spread elsewhere in the body.

  • Blood tests. These tests evaluate the blood and check for problems with the liver and kidneys. The doctor may also look at the blood for changes in chromosome 13. Chromosomes are the parts of a cell that contain genes, and in a few cases of retinoblastoma, these genes are either missing or nonfunctional. Molecular analysis of the gene is now possible in a few medical centers to determine changes that are not visible on an ordinary chromosome analysis.

  • Lumbar puncture (spinal tap). A lumbar puncture is a procedure in which a needle is used to take a sample of cerebral spinal fluid (CSF) to look for cancer cells, blood, or tumor markers, which are substances found in higher than normal amounts in the blood, urine, or body tissues of people with certain kinds of cancer. CSF is the fluid that flows around the brain and the spinal cord. Doctors generally give an anesthetic to numb the child’s lower back before the procedure.

  • Bone marrow aspiration and biopsy. These 2 procedures are similar and often done at the same time to examine the bone marrow. Bone marrow is the spongy, fatty tissue found inside larger bones that produces blood cells. Bone marrow has both a solid and a liquid part. A bone marrow aspiration removes a sample of the fluid with a needle. A bone marrow biopsy is the removal of a small amount of solid tissue using a needle. 

    A pathologist then analyzes the sample(s). A pathologist is a doctor who specializes in interpreting laboratory tests and evaluating cells, tissues, and organs to diagnose disease. A common site for a bone marrow aspiration and biopsy is the pelvic bone, which is located in the lower back by the hip. Doctors generally give anesthesia beforehand to numb the area and to lessen the pain. 

  • Hearing test. Children with retinoblastoma taking specific types of chemotherapy (see Types of Treatment) may have their hearing tested to make sure the drugs are not causing hearing loss. This may also be called an audiology test.

Learn more about preparing your child for medical tests. After diagnostic tests are done, your child's doctor will review all of the results with you. If the diagnosis is cancer, these results also help the doctor describe the cancer. This is called staging.

The next section in this guide is Stages. It explains the system doctors use to describe the extent of the disease. Use the menu to choose a different section to read in this guide.

Retinoblastoma - Childhood - Stages

Approved by the Cancer.Net Editorial Board, 04/2020

ON THIS PAGE: You will learn about how doctors describe a cancer’s growth or spread. This is called the stage. Use the menu to see other pages.

Staging is a way of describing where the cancer is located, if or where it has spread, and whether it is affecting other parts of the body.

Doctors use diagnostic tests to find out the cancer's stage, so staging may not be complete until all the tests are finished. Knowing the stage helps the doctor to decide what kind of treatment is best and can help predict a patient's prognosis, which is the chance of recovery. There are different stage descriptions for different types of cancer.

After a retinoblastoma has been found, the doctor will determine the extent of disease in the eye and if the disease has spread outside the eye. This is called staging, and it helps doctors plan treatment. First, the doctor will determine if the retinoblastoma is intraocular or extraocular.

  • Intraocular. This means that cancer occurs in 1 or both eyes, but has not spread into surrounding tissues or other parts of the body.

  • Extraocular. The cancer has spread to tissues around the eye(s) or to other parts of the body.

For intraocular retinoblastoma, there is an additional staging system to help doctors plan treatment. This system is called the International Classification System for Intraocular Retinoblastoma. 

Intraocular retinoblastomas are classified as Group A through E, based on the extent of the tumor growth and the cancer's effects on the eye. The group classification also indicates the chance that the affected eye or eyes can be saved with treatment. 

International Classification System for Intraocular Staging

Group A:

  • Very low risk of losing the affected eye(s)

  • Small tumors, 3 millimeters (mm) or smaller

  • Tumors are only in the retina, the layer of tissue at the back of the eye

  • Tumors are not near the foveola (the central "pit" of the retina) or the optic nerve

  • No tumors are floating in the eye, known as vitreous seeding

  • No retinal detachment, an emergency situation where the retina is pulled away from its normal position

Group B:

  • Low risk of losing the affected eye(s)

  • One or more tumors are larger than 3 mm

  • Tumors are only in the retina

  • No vitreous seeding. Vitreous seeding is when the tumors have spread into the vitreous, a clear gel-like fluid that fills the eye 

  • No retinal detachment more than 5 mm from the tumor base

Group C:

  • Moderate risk of losing the affected eye(s)

  • Tumors are well-defined

  • Some spread of tumors under the retina, known as subretinal seeding

  • Tumors may have also spread into the vitreous, known as vitreous seeding

  • There is retinal detachment and it is more than 5 mm from the tumor base up to a complete retinal detachment 

Group D:

  • There is a high risk of losing the affected eye(s)

  • Tumor spread is extensive into the vitreous/beneath the retina 

  • Vitreous or sub-retinal snowballs/masses

  • There is retinal detachment and it is more than 5 mm from the tumor base up to a complete retinal detachment

Group E:

Intraocular retinoblastomas that are classified as group E have damaged the eye extensively. There is almost no chance of saving the affected eye(s).

  • Large tumor(s) extending toward the front of the eye

  • Neovascular glaucoma. Glaucoma is damage caused by pressure within the eye. With neovascular glaucoma, this pressure is caused by new blood vessels growing in the front part of the eye as a result of the tumor. 

  • Vitreous hemorrhage, which is bleeding from the eye

  • Phthisical/prephthisical eye, which is a condition where the eye shrinks and deteriorates 

  • Hyphema, which is blood in the front of the eye/corneal staining

  • Orbital cellulitis-like presentation, which means it looks like there is an infection in the eye, but no infection is present

  • Tumor anterior to anterior hyaloids, which means the tumor is behind the thin membrane that separates the vitreous from other parts of the eye. 

Extraocular staging

This staging system applies to retinoblastoma that has spread outside of the eye, either to the tissues around the eye(s) or the central nervous system (CNS), bone marrow, or lymph nodes. The information below also includes the basics of how each stage is treated. There is more detailed information in this guide’s Types of Treatment section.

Stage 0 (zero). This means that the cancer is in the eye (called intraocular) and has not spread outside of the eye. Patients with stage 0 disease should be classified based on the International Classification System, outlined above. Doctors recommend conservative treatment for this stage with no additional adjuvant therapy, meaning no additional treatment after surgery.

Stage I. A classification of stage I means that the eye has already been removed and there is some microscopic spread to the optic nerve. These patients need adjuvant chemotherapy after surgery.

Stage II. This stage means that the tumor has spread to the optic nerve or the sclera, which is the white part of the eye. Patients with this stage need adjuvant chemotherapy and possibly radiation therapy.

Stage III. This means that the cancer has spread to the lymph nodes or the bony cavity that surrounds the eyeball. It is divided into 2 substages, called stage IIIa and stage IIIb, depending on where the tumor has spread. The treatment for this stage involves both chemotherapy and radiation therapy.

Stage IV. In stage IV, the tumor has spread to distant areas of the body outside the eye, via the lymphatic system and blood vessels. Stage IV is divided into substages of IVa and IVb. Stage IVb is further divided into IVb1, IVb2, and IVb3, depending on the location of the spread. This stage of extraocular retinoblastoma is treated with high-dose chemotherapy followed by stem cell rescue. This means that the child’s stem cell/bone marrow cells are replaced with healthy cells. Learn more about bone marrow/stem cell transplantation. Radiation therapy may also be used in addition to high-dose chemotherapy for some children with stage IV disease.

Recurrent. Recurrent cancer is cancer that has come back after treatment. If the cancer does return, there will be another round of tests to learn about the extent of the recurrence. These tests and scans are often similar to those done at the time of the original diagnosis.

Information about the cancer’s stage will help the doctor recommend a specific treatment plan. The next section in this guide is Types of Treatment. Use the menu to choose a different section to read in this guide.

Retinoblastoma - Childhood - Types of Treatment

Approved by the Cancer.Net Editorial Board, 04/2020

ON THIS PAGE: You will learn about the different types of treatments doctors use for children with retinoblastoma. Use the menu to see other pages.

In general, cancer in children is uncommon. This means it can be hard for doctors to plan treatments unless they know what has been most effective in other children. That is why more than 60% of children with cancer are treated as part of a clinical trial. A clinical trial is a research study that tests a new approach to treatment. The “standard of care” is the best treatments known. Clinical trials may test such approaches as a new drug, a new combination of existing treatments, or new doses of current therapies. The health and safety of all children participating in clinical trials are closely monitored.

To take advantage of these newer treatments, children with cancer should be treated at a specialized cancer center. Doctors at these centers have extensive experience in treating children with cancer and have access to the latest research. A doctor who specializes in treating children with cancer is called a pediatric oncologist. If a pediatric cancer center is not nearby, general cancer centers sometimes have pediatric specialists who are able to be part of your child’s care.

Treatment overview

In many cases, a team of doctors works with a child and their family to provide care. This is called a multidisciplinary teamPediatric cancer centers often have extra support services for children and their families, such as child life specialists, dietitians, physical and occupational therapists, social workers, and counselors. Special activities and programs to help the child and family cope may also be available.

Several types of therapies are used for retinoblastoma, and more than 90% of children can be cured. In addition to curing the retinoblastoma, an important goal of treatment is the preservation of vision. Many of the treatment approaches described below have become available as a result of clinical trials. The 
Children’s Oncology Group has recently developed clinical trials about treatment for retinoblastoma. (Please note this link takes you to another website.)

Descriptions of the common types of treatments used for retinoblastoma are listed below. Your child's care plan also includes treatment for symptoms and side effects, an important part of cancer care.

Treatment options and recommendations depend on several factors, including the type and stage of cancer, possible side effects, the family’s preferences, and the patient’s overall health. Take time to learn about all of your child’s treatment options and be sure to ask questions about things that are unclear. Talk with your child’s doctor about the goals of each treatment and what your child can expect while receiving the treatment. These types of talks are called "shared decision making." Shared decision making is when your family and your child's doctors work together to choose treatments that fit the goals of your child's care. Shared decision making is particularly important for retinoblastoma because there are different treatment options. Learn more about making treatment decisions.

Surgery

Surgery is the removal of the tumor and some surrounding healthy tissue during an operation. Surgery to remove the eye is called enucleation. Your child's ocular oncologist, a doctor who specializes in eye cancer, will determine if surgery is the best option to treat your child's retinoblastoma.

Children with a tumor in 1 eye only can often be cured with this treatment. For children with a tumor in both eyes, enucleation is only used if other types of treatment to preserve vision are not possible. Surgical treatment for retinoblastoma should be performed by a specially trained pediatric ophthalmologist. Talk with your child's pediatric ophthalmologist or ocular oncologist about the recovery and possible side effects for the surgery your child is having. Learn more about the basics of cancer surgery.

If enucleation is the best treatment to cure the cancer, there will be some loss of eyesight. This may result in trouble with depth perception, but most children adapt well to these differences over time. Talk with your child's doctor about what to expect if enucleation is recommended and what support services are available to help your child adapt to any visual changes.

Many people worry about what their child will look like when they have an eye removed. Your child can have cosmetic surgery to fill the area left by the missing eye. They will be fitted with an artificial eye called a prosthesis. The prosthesis will look and behave almost the same as a natural eye. The artificial eye will move along with the person's remaining eye, though not as much as a natural eye moves. Most people will be unable to tell the difference. If enucleation is required, talk with your child's doctor about a prosthesis. 

Radiation therapy

Radiation therapy is the use of high-energy x-rays or other particles to destroy cancer cells. A doctor who specializes in giving radiation therapy to treat cancer is called a radiation oncologist. A radiation therapy regimen, or schedule, usually consists of a specific number of treatments given over a set period of time.

The most common type of radiation treatment is called external-beam radiation therapy, which is radiation therapy given from a machine outside the body. Proton beam radiation therapy is a more precise way of delivering radiation therapy, which could decrease both the severity and frequency of short and long-term side effects. Only a few centers can offer this type of radiation therapy. Talk with your child's doctor about its availability and whether it is recommended for your child.

Radioactive plaque therapy, also called internal radiation therapy or brachytherapy, is the delivery of radiation therapy directly to the eye with a disc containing radiation. 

Fatigue, drowsiness, nausea, vomiting, and headaches are common side effects of radiation therapy, and these usually go away after treatment. Radiation therapy in young children can interfere with the body’s normal development, including growth of the bones around the eye, depending on the dose. The increased risk of additional tumors later in life for children with the hereditary form of retinoblastoma (see Risk Factors) is further increased after external-beam radiation therapy. These effects are not seen after radioactive plaque therapy. 

Talk with your health care team about potential side effects of your child's radiation therapy plan. Learn more about the basics of radiation therapy.

Cryotherapy

Cryosurgery, also called cryotherapy or cryoablation, uses liquid nitrogen to freeze and destroy cells. More than 1 freezing may be needed.

Laser therapy

Laser therapy uses heat in the form of a laser to shrink a smaller tumor. It may be called thermotherapy or "TTT" for transpupillary thermotherapy. It may be used alone or in addition to cryotherapy or radiation therapy. Photocoagulation is a different type of laser therapy that uses light to shrink tumors.

Chemotherapy

Chemotherapy is the use of drugs to destroy cancer cells, usually by keeping the cancer cells from growing, dividing, and making more cells. It may be used to shrink an eye tumor. Chemotherapy is given by a pediatric oncologist or a medical oncologist, a doctor who specializes in treating cancer with medication. A chemotherapy regimen, or schedule, usually consists of a specific number of cycles given over a set period of time.

Chemotherapy often makes it possible to completely get rid of any remaining smaller tumors with the following focal (localized) measures, outlined above:

  • Thermotherapy or photocoagulation (laser therapy)

  • Cryotherapy

  • Radioactive plaque therapy

Chemoreduction uses chemotherapy to reduce the size of the tumor. This is a treatment approach that is often used for children with retinoblastoma in both eyes in the hope of avoiding enucleation and preserving vision in at least 1 eye. The ophthalmologist, working closely with the pediatric oncologist, will determine if this treatment is appropriate.

Children with low-risk disease and some children with intermediate-risk disease may be able to avoid chemotherapy after surgery or reduce the intensity of chemotherapy. Talk with the doctors about whether this approach is appropriate for your child. Both doctors will regularly monitor how well the treatment is working and may recommend additional treatment to prevent the cancer from returning.

The drugs used most often for retinoblastoma are vincristine (Oncovin, Vincasar PFS), carboplatin (Paraplatin), and etoposide (Toposar, VePesid). Depending on the extent of the tumor, a combination of 2 or more drugs may be recommended. All chemotherapy has side effects that occur during treatment. Some drugs may also cause specific long-term side effects. Talk with your child's doctor about the specific drugs used and the possible short-term and long-term side effects before treatment begins.

There are different ways to give chemotherapy for retinoblastoma. Systemic chemotherapy is when medication is given through the bloodstream to reach cancer cells throughout the body. Common ways to give chemotherapy include an intravenous (IV) tube placed into a vein using a needle or in a pill or capsule that is swallowed (orally).

Chemotherapy can also be delivered directly into the artery or the blood vessel that supplies the affected eye. This is known as intra-arterial chemotherapy (IA therapy). It can also be delivered by directly injecting into the cavity of the eye, called intravitreal chemotherapy (IVIT therapy).

IA therapy is done by inserting a catheter in the child’s groin area. The doctor moves the catheter with the help of imaging technology to reach the blood vessel in the head that directly supplies the eye. This procedure may be used in an effort to save the eye in children with advanced disease if the tumor is still confined to the eye. This method of giving chemotherapy with 1 or several drugs is being used both in children with 1 affected eye or 2 affected eyes. This method is performed by an interventional radiologist.

IVIT therapy is effective in treating vitreous seeds, which are found in the fluid inside the eye. Vitreous seeds are difficult to treat with systemic chemotherapy alone.

Learn more about the basics of chemotherapy.

Bone marrow transplantation/stem cell transplantation

For some children with Stage IV extraocular retinoblastoma, a bone marrow transplant may be recommended. The child is first treated with high doses of chemotherapy (and/or radiation therapy) to destroy as many cancer cells as possible, then the transplantation takes place.

A bone marrow transplant is a medical procedure in which bone marrow that contains cancer is replaced by highly specialized cells. These cells, called hematopoietic stem cells, develop into healthy bone marrow. Hematopoietic stem cells are blood-forming cells found both in the bloodstream and in the bone marrow. This procedure is also called a stem cell transplant. This is because it is the stem cells in the blood that are typically being transplanted, not the actual bone marrow tissue. 

Before recommending transplantation, doctors will talk with the patient about the risks of this treatment. They will also consider several other factors, such as results of any previous treatment and the patient’s age and general health.

There are 2 types of stem cell transplantation depending on the source of the replacement blood stem cells: allogeneic (ALLO) and autologous (AUTO). ALLO uses donated stem cells, while AUTO uses the patient’s own stem cells. In both types, the goal is to destroy all of the cancer cells in the marrow, blood, and other parts of the body using high doses of chemotherapy and/or radiation therapy and then allow replacement blood stem cells to create healthy bone marrow.

Side effects depend on the type of transplant, your child’s general health, and other factors. Learn more about the basics of stem cell and bone marrow transplantation.

Physical, emotional, and social effects of cancer

Cancer and its treatment cause physical symptoms and side effects, as well as emotional, social, and financial effects. Managing all of these effects is called palliative care or supportive care. It is an important part of your child's care that is included along with treatments intended to slow, stop, or eliminate the cancer. 

Palliative care focuses on improving how your child feels during treatment by managing symptoms and supporting patients and their families with other, non-medical needs. Any person, regardless of age or type and stage of cancer, may receive this type of care. And it often works best when it is started right after a cancer diagnosis. People who receive palliative care along with treatment for the cancer often have less severe symptoms, better quality of life, and report that they are more satisfied with treatment. 

Palliative treatments vary widely and often include medication, nutritional changes, relaxation techniques, emotional and spiritual support, and other therapies. Your child may also receive palliative treatments similar to those meant to get rid of the cancer, such as chemotherapy, surgery, or radiation therapy. 

Before treatment begins, talk with your child's doctor about the goals of each treatment in the treatment plan. You should also talk about the possible side effects of the specific treatment plan and palliative care options. 

During treatment, your child's health care team may ask you to answer questions about your child's symptoms and side effects and to describe each problem. Be sure to tell the health care team if your child experiences a problem. This helps the health care team treat any symptoms and side effects as quickly as possible. It can also help prevent more serious problems in the future. 

Learn more about the importance of tracking side effects in another part of this guide. Learn more about palliative care in a separate section of this website. 

Remission and the chance of recurrence

A remission is when cancer cannot be detected in the body and there are no symptoms. This may also be called having “no evidence of disease” or NED.

A remission may be temporary or permanent. This uncertainty causes many people to worry that the cancer will come back. Although many remissions are permanent, it is important to talk with your child’s doctor about the possibility of the cancer returning. Understanding your child’s risk of recurrence and the treatment options may help you and your child feel more prepared if the cancer does return. Learn more about coping with the fear of recurrence.

If the cancer returns after the original treatment, it is called recurrent cancer. It may come back in the same place (called a local recurrence), nearby (regional recurrence), or in another place (distant recurrence).

When this occurs, a new cycle of testing will begin again to learn as much as possible about the recurrence. After this testing is done, you and your child’s doctor will talk about your treatment options. If retinoblastoma returns after treatment, the treatment plan depends on where the cancer recurred and how aggressive the new tumor is. The doctor may recommend surgery, radiation therapy, chemotherapy, and/or focal measures, such as photocoagulation, thermotherapy, or cryotherapy (see above). The doctor may suggest clinical trials that are studying new ways to treat this type of recurrent cancer. Whichever treatment plan you choose, palliative care will be important for relieving symptoms and side effects.

People with recurrent cancer and their families often experience emotions such as disbelief or fear. Parents are encouraged to talk with their health care team about these feelings and ask about support services to help them cope. Learn more about dealing with cancer recurrence.

If treatment does not work

Although treatment is successful for most children with retinoblastoma, sometimes it is not. If a child’s cancer cannot be cured or controlled, this is called advanced or terminal cancer. This diagnosis is stressful, and advanced cancer may be difficult to discuss. However, it is important to have open and honest conversations with your child’s health care team to express your family’s feelings, preferences, and concerns. The health care team has special skills, experience, and knowledge to support patients and their families and is there to help.

Hospice care is designed to provide the best possible quality of life for people who are expected to live less than 6 months. Parents or guardians are encouraged to talk with the health care team about hospice options, which include hospice care at home, a special hospice center, or other health care locations. Nursing care and special equipment can make staying at home a workable option for many families. Some children may be happier if they can attend school part-time or keep up other activities and social connections. The child’s health care team can help parents or guardians decide on an appropriate level of activity. Making sure a child is physically comfortable and free from pain is extremely important as part of end-of-life care. Learn more about caring for a terminally ill child and advanced cancer care planning.

The death of a child is an enormous tragedy, and families may need support to help them cope with the loss. Pediatric cancer centers often have professional staff and support groups to help with the process of grieving. Learn more on grieving the loss of a child.

The next section in this guide is About Clinical Trials. It offers more information about research studies that are focused on finding better ways to care for children with cancer. Use the menu to choose a different section to read in this guide.

Retinoblastoma - Childhood - About Clinical Trials

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ON THIS PAGE: You will learn more about clinical trials, which are the main way that new medical approaches are tested to see how well they work. Use the menu to see other pages.

What are clinical trials?

Doctors and scientists are always looking for better ways to care for children with retinoblastoma. To make scientific advances, doctors create research studies involving volunteers, called clinical trials. Every drug that is now approved by the U.S. Food and Drug Administration (FDA) was tested in clinical trials.

Clinical trials are used for all types and stages of retinoblastoma. Many focus on new treatments to learn if a new treatment is safe, effective, and possibly better than the existing treatments. These types of studies evaluate new drugs, different combinations of treatments, new approaches to radiation therapy or surgery, and new methods of treatment.

Children who participate in clinical trials can be some of the first to get a treatment before it is available to the public. However, there are some risks with a clinical trial, including possible side effects and the chance that the new treatment may not work. People are encouraged to talk with their health care team about the pros and cons of joining a specific study.

Some clinical trials study new ways to relieve symptoms and side effects during treatment. Others study ways to manage the late effects that may happen a long time after treatment. Talk with your child's doctor about clinical trials for symptoms and side effects.

Deciding to join a clinical trial

Patients decide to participate in clinical trials for many reasons. For some people, a clinical trial is the best treatment option available. Because standard treatments are not perfect, people are often willing to face the added uncertainty of a clinical trial in the hope of a better result. Other people volunteer for clinical trials because they know that these studies are a way to contribute to the progress in treating retinoblastoma. Even if they do not benefit directly from the clinical trial, their participation may benefit future patients with retinoblastoma.

Insurance coverage and the costs of clinical trials differ by location and by study. In some programs, some of the expenses from participating in the clinical trial are reimbursed. In others, they are not. It is important to talk with the research team and your insurance company first to learn if and how your treatment in a clinical trial will be covered. Learn more about health insurance coverage of clinical trials.

Sometimes people have concerns that, in a clinical trial, their child may receive no treatment by being given a placebo or a “sugar pill.” The use of placebos in cancer clinical trials in this way is rare overall and not done at all in childhood cancer research. Find out more about placebos in cancer clinical trials.

Patient safety and informed consent

To join a clinical trial, parents and children must participate in a process known as informed consent. During informed consent, the doctor should:

  • Describe all of the treatment options so that the family understands how the new treatment differs from the standard treatment.

  • List all of the risks of the new treatment, which may or may not be different from the risks of standard treatment.

  • Explain what will be required of each person in order to participate in the clinical trial, including the number of doctor visits, tests, and the schedule of treatment.

Clinical trials also have certain rules called “eligibility criteria” that help structure the research and keep patients safe. You and the research team will carefully review these criteria together.

Children who participate in a clinical trial may stop participating at any time for personal or medical reasons. This may include that the new treatment is not working or there are serious side effects. Clinical trials are also closely monitored by experts who watch for any problems with each study. It is important that parents with a child participating in a clinical trial talk with their child’s doctor and researchers about who will be providing their treatment and care during the clinical trial, after the clinical trial ends, and/or if the child leaves the clinical trial before it ends.

Finding a clinical trial

Research through clinical trials is ongoing for all types of cancer. For specific topics being studied for retinoblastoma, learn more in the Latest Research section.

Cancer.Net offers a lot of information about cancer clinical trials in other areas of the website, including a complete section on clinical trials and places to search for clinical trials for a specific type of cancer.

PRE-ACT, Preparatory Education About Clinical Trials

In addition, this website offers free access to a video-based educational program about cancer clinical trials located in another section of this website.

The next section in this guide is Latest Research. It explains areas of scientific research for retinoblastoma. Use the menu to choose a different section to read in this guide.

Retinoblastoma - Childhood - Latest Research

Approved by the Cancer.Net Editorial Board, 04/2020

ON THIS PAGE: You will read about the scientific research being done to learn more about this type of cancer and how to treat it. Use the menu to see other pages.

Doctors are working to learn more about retinoblastoma, ways to prevent it, how to best treat it, and how to provide the best care to children diagnosed with retinoblastoma. The Children’s Oncology Group has begun clinical trials to research the treatment options listed below, and these clinical trials may be open for some children with retinoblastoma. Always talk with your child’s doctor about the best diagnostic and treatment options for your child.

  • More intensive treatment with chemotherapy and radiation treatment to preserve vision for children with advanced disease in both eyes

  • Improved ways to deliver chemotherapy directly to the eye so that children can be spared the side effects of receiving chemotherapy to the entire body

  • Less intensive treatment with chemotherapy for small tumors

  • Better ways of determining which children who have had enucleation need chemotherapy, and whether chemotherapy can prevent the spread of a tumor

  • Aggressive treatment to cure children who have had a recurrence of retinoblastoma or have had the cancer spread outside the eye

  • Better ways of reducing symptoms and side effects of current retinoblastoma treatments in order to improve patients’ comfort and quality of life

Looking for More About the Latest Research?

If you would like additional information about the latest areas of research regarding retinoblastoma, explore these related items that take you outside of this guide:

The next section in this guide is Coping with Treatment. It offers some guidance on how to cope with the physical, emotional, social, and financial changes that cancer and its treatment can bring. Use the menu to choose a different section to read in this guide.

Retinoblastoma - Childhood - Coping with Treatment

Approved by the Cancer.Net Editorial Board, 04/2020

ON THIS PAGE: You will learn more about coping with the physical, emotional, social, and financial effects of childhood cancer and its treatment. This page includes several links outside of this guide to other sections of this website. Use the menu to see other pages.

Every cancer treatment can cause side effects or changes to your child’s body and how they feel. For many reasons, people do not experience the same side effects even when given the same treatment for the same type of cancer. This can make it hard to predict how your child will feel during treatment.

As your family prepares to start cancer treatment, it is normal to fear treatment-related side effectsIt may help to know that your child's health care team will work to prevent and relieve side effects. Doctors call this part of cancer treatment “palliative care” or "supportive care." It is an important part of your child’s treatment plan, regardless of their age or the stage of disease.

Coping with physical side effects

Common physical side effects from each treatment option for retinoblastoma are described within the Types of Treatment section. Learn more about side effects of cancer and its treatment, along with ways to prevent or control themChanges to your child’s physical health depend on several factors, including the cancer’s stage, the length and dose of treatment, and your child’s general health.

It is important to discuss any new side effects or changes in existing side effects with your child’s health care team. Providing this information helps them find ways to treat or manage the side effects so your child feels more comfortable and can potentially keep any side effects from worsening.

You may find it helpful to keep track of your child’s side effects so you are prepared to discuss any changes with the health care team. Learn more about why tracking side effects is helpful

Sometimes, physical side effects can last after treatment ends. Doctors call these long-term side effects. They call side effects that occur months or years after treatment late effects Treating long-term side effects and late effects is an important part of care for childhood cancer survivors. Learn more by reading the Follow-up Care section of this guide or talking with your child’s doctor.

Coping with emotional and social effects

Your family can have emotional and social effects after a cancer diagnosis. This may include dealing with difficult emotions, such as anxiety or anger, or managing stress. Sometimes, people find it difficult to express how they feel to their loved ones. Some have found that talking to an oncology social worker, counselor, or member of the clergy can help them develop more effective ways of coping and talking about cancer. 

You can also find coping strategies for emotional and social effects in a separate section of this website. This section includes many resources for finding support and information to meet your family’s needs.

Coping with the costs of cancer care

Cancer treatment can be expensive. It is often a big source of stress and anxiety for families dealing with a cancer diagnosis. In addition to treatment costs, many people find they have extra, unplanned expenses related to their child’s care. Families are encouraged to talk about financial concerns with a member of their health care team. Learn more about managing financial considerations in a separate part of this website.

Caring for a child with cancer

Family members and friends often play an important role in taking care of a person with retinoblastoma. This is called being a caregiver. As a parent or guardian, you are the primary caregiver for your child. However, friends and family members can give your family valuable support, even if they live far away.

When your child has retinoblastoma, you may have an additional range of responsibilities. These may include giving medications or managing symptoms and side effects. However, it is important to seek help from others. Below are some of the responsibilities your family or friends could help with:

  • Providing short-term care for your child

  • Giving support and encouragement

  • Assisting with meals or household chores

  • Helping with insurance and billing issues

Learn more about caregiving.

Talking with your child's health care team about side effects

Before starting treatment, talk with your child’s doctor about possible side effects. Ask:

  • Which side effects are most likely?

  • When are they likely to happen?

  • What can we do to prevent or relieve them?

Be sure to tell your child's health care team about any side effects that happen during treatment and afterward, too. Tell them even if you do not think the side effects are serious. This discussion should include physical, emotional, social, and financial effects of cancer.

Also, ask how much care your child may need at home and with daily tasks during and after treatment. This can help you make a caregiving plan. Create a caregiving plan with this 1-page fact sheet that includes an action plan to help make caregiving a team effort. This free fact sheet is available as a PDF, so it is easy to print.

Looking for More on How to Track Side Effects?

Cancer.Net offers several resources to help you keep track of symptoms and side effects. Please note that these links will take you to other sections of Cancer.Net:

  • Cancer.Net Mobile: The free Cancer.Net mobile app allows you to securely record the time and severity of your child's symptoms and side effects.

  • ASCO Answers Managing Pain: Get this 36-page booklet about the importance of pain relief that includes a pain tracking sheet to record how pain affects your child. The free booklet is available as a PDF, so it is easy to print.

  • ASCO Answers Fact Sheets: Read 1-page fact sheets on anxiety and depressionconstipationdiarrhea, and rash that provide a tracking sheet to record details about the side effect. These free fact sheets are available as a PDF, so they are easy to print, fill out, and give to your health care team.

The next section in this guide is Follow-up CareIt explains the importance of checkups after your child finishes cancer treatment. Use the menu to choose a different section to read in this guide.

Retinoblastoma - Childhood - Follow-Up Care

Approved by the Cancer.Net Editorial Board, 04/2020

ON THIS PAGE: You will read about your child’s medical care after cancer treatment is completed and why this follow-up care is important. Use the menu to see other pages.

Care for children diagnosed with cancer does not end when active treatment has finished. Your child’s health care team will continue to check that the cancer has not come back, manage any side effects, and monitor your child’s overall health. This is called follow-up care. All children treated for cancer, including retinoblastoma, should have life-long, follow-up care.

Your child’s follow-up care may include regular physical examinations, medical tests, or both. Doctors want to keep track of your child’s recovery in the months and years ahead. Once a child has been free of retinoblastoma for 2 to 4 years after treatment and is considered cured, the emphasis during periodic follow-up visits changes. Pediatric oncologists will focus on enhancing the quality of the child’s life, including addressing developmental and emotional concerns.

If enucleation took place, most young children adapt well to the loss of 1 eye. Rarely, both eyes will need to be removed to save the child’s life. If both eyes are removed, the local educational system is required to provide special services. Parents are encouraged to investigate the school’s services and advocate on their child’s behalf. Other rehabilitation services may also be needed to help the child cope with the vision loss.

Cancer rehabilitation after retinoblastoma treatment could mean any of a wide range of services, such as physical therapy, career counseling, pain management, nutritional planning, and/or emotional counseling. The goal of rehabilitation is to help people regain control over many aspects of their lives and remain as independent and productive as possible. Learn more about cancer rehabilitation.

Learn more about the importance of follow-up care.

Watching for recurrence

One goal of follow-up care is to check for a recurrence, which means that the cancer has come back. Cancer recurs because small areas of cancer cells may remain undetected in the body. Over time, these cells may increase in number until they show up on test results or cause signs or symptoms.

During follow-up care, a doctor familiar with your child’s medical history can give you personalized information about the risk of recurrence. Your child's doctor will ask specific questions about your child’s health. Some children may have blood tests or imaging tests done as part of regular follow-up care, but testing recommendations depend on several factors, including the type and stage of cancer first diagnosed and the types of treatment given.

The anticipation before having a follow-up test or waiting for test results can add stress to you or a family member. This is sometimes called “scan-xiety.” Learn more about how to cope with this type of stress.

Managing long-term and late side effects of childhood cancer

Sometimes, side effects may linger beyond the active treatment period. These are called long-term side effects. Other side effects called late effects may develop months or even years afterwards. Late effects can occur almost anywhere in the body. They include physical problems, such as heart and lung problems, and second cancers, which is a new cancer that happens in someone who has had cancer before. They also include emotional problems, such as anxiety and depression, and problems with memory, thinking, attention, and learning.

Based on the type of treatment your child received and whether the child has the genetic form of retinoblastoma, the doctor will determine what evaluations are needed to check for long-term effects. This may include imaging studies (CT scan or MRI) and blood tests. Counseling will also be provided for children who have an increased risk of additional tumors later in life, such as those with retinoblastoma in both eyes and those with retinoblastoma in 1 eye who have a family history of the disease. Yearly visits to specialized ophthalmologic and medical oncologists are necessary in order to fully monitor the child’s recovery and to find any secondary cancer in its earliest stages. Follow-up care should also address any developmental or emotional concerns from having had cancer and its treatment.

The Children's Oncology Group (COG) has studied the physical and psychological effects that childhood cancer survivors face. Based on these studies, COG has created recommendations for long-term follow-up care for childhood, adolescent, and young adult cancer survivors that can be found on a separate website of COG: www.survivorshipguidelines.org.

Keeping a child’s personal health record

You are encouraged to organize and keep a personal record of your child’s medical information. The doctor will help you create this. That way, as the child enters adulthood, they have a clear, written history of the diagnosis, the treatments, and the doctor’s recommendations about the schedule for follow-up care. ASCO offers forms to help keep track of the cancer treatment your child received and develop a survivorship care plan when treatment is completed.

Some children continue to see their oncologist, while others transition back to the care of their family doctor or another health care professional. This decision depends on several factors, including the type and stage of cancer, side effects, health insurance rules, and your family’s personal preferences. Talk with the health care team about your child’s ongoing medical care and any concerns you have about their future health.

If a doctor who was not directly involved in your child’s cancer care will lead the follow-up care, be sure to share the cancer treatment summary and survivorship care plan forms with them and with all future health care providers. Details about the specific cancer treatment given are very valuable to the health care professionals who will care for your child throughout their lifetime.

The next section in this guide is Survivorship. It describes how to cope with challenges in everyday life after a cancer diagnosis. Use the menu to choose a different section to read in this guide.

Retinoblastoma - Childhood - Survivorship

Approved by the Cancer.Net Editorial Board, 04/2020

ON THIS PAGE: You will read about how to cope with challenges in everyday life after your child’s cancer diagnosis. Use the menu to see other pages.

What is survivorship?

The word “survivorship” means different things to different people, but it often describes living with, through, and beyond cancer. In some ways, survivorship is one of the most complex aspects of the cancer experience because it is different for every child and their family.

After active cancer treatment ends, children and their families may experience a mixture of strong feelings, including joy, concern, relief, guilt, and fear. Some people say they appreciate life more after a cancer diagnosis. Other families stay very anxious about their child’s health and become uncertain about coping with everyday life.

One source of stress may occur when frequent visits to the health care team end after completing treatment. Often, relationships built with the cancer care team provide a sense of security during treatment, and children and their families miss this source of support. This may be especially true when new worries and challenges surface over time, such as any late effects of treatment, educational issues, emotional challenges, sexual development and fertility concerns, and/or financial issues.

Every family faces different concerns and challenges. With any challenge, a good first step is being able to recognize each fear and talk about it. Effective coping requires:

  • Understanding the challenge your family is facing

  • Thinking through solutions

  • Asking for and allowing the support of others

  • Feeling comfortable with the course of action your family chooses

It may be helpful to join an in-person support group or online community of childhood cancer survivors. Support groups also exist for parents of children diagnosed with cancer. This allows you to talk with people who have had similar first-hand experiences. Other options for finding support include talking with a friend or member of the health care team, individual counseling, or asking for assistance at the learning resource center of the place where your child received treatment.

Changing role of caregivers

Parents, other family members, and friends may also go through periods of transition. A caregiver plays a very important role in supporting a child diagnosed with cancer, providing physical, emotional, and practical care on a daily or as-needed basis. Many caregivers become focused on providing this support, especially if the treatment period lasts for many months or longer.

However, as treatment is completed, the caregiver's role often changes. Eventually, the need for caregiving related to a child’s cancer diagnosis will become much less or come to an end as your child gets older. Family counselors at pediatric cancer centers can help with this transition. You can also learn more about adjusting to life after caregiving.

Healthy living after cancer

Survivorship often serves as a strong motivator to make lifestyle changes, often for the whole family.

Children who have had cancer can enhance the quality of their future by following established guidelines for good health into and through adulthood, including not smoking, maintaining a healthy weight, eating well, managing stress, and participating in regular physical activity. Talk with the doctor about developing a plan that is best for your child’s needs. Learn more about making healthy lifestyle choices.

It is important that your child has recommended medical checkups and tests (see Follow-up Care) to take care of their health. 

Talk with the doctor to develop a survivorship care plan that is best for your child’s needs.

Looking for More Survivorship Resources?

For more information about cancer survivorship, explore these related items. Please note these links will take you to other sections of Cancer.Net:

  • Survivorship Resources: Cancer.Net offers information and resources to help survivors cope, including specific sections for children and teens and young adults. There is also a main section on survivorship for people of all ages.

  • ASCO Answers Cancer Survivorship GuideGet this 44-page booklet that helps people transition into life after treatment. It includes blank treatment summary and survivorship care plan forms. The free booklet is available as a PDF, so it is easy to print.

  • Cancer.Net Patient Education VideoView a short video led by an ASCO expert that provides information about childhood cancer survivorship.

The next section offers Questions to Ask the Health Care Team to help start conversations with your child’s cancer care team. Use the menu to choose a different section to read in this guide.

Retinoblastoma - Childhood - Questions to Ask the Health Care Team

Approved by the Cancer.Net Editorial Board, 04/2020

ON THIS PAGE: You will find some questions to ask the health care team, to help you better understand your child’s diagnosis, treatment plan, and overall care. Use the menu to see other pages.

Talking often with the health care team is important to make informed decisions about your child’s health care. These suggested questions are a starting point to help you learn more about your child’s cancer care and treatment. You are also encouraged to ask additional questions that are important to you. You may want to print this list and bring it to the next appointment, or download Cancer.Net’s free mobile app for a digital list and other interactive tools to manage your child’s care. It may also be helpful to ask a family member or friend to come with you to appointments to help take notes. Cancer.Net Mobile app question tracker

Questions to ask after getting a diagnosis

  • Does my child have the genetic form of retinoblastoma?

  • What is the stage of the disease? What does this mean?

  • Can you explain my child’s pathology report (laboratory test results) to me?

Questions to ask about choosing a treatment and managing side effects

  • What are the treatment options?

  • What clinical trials are available for my child? Where are they located, and how do I find out more about them?

  • Who will be part of my child’s health care team, and what does each member do?

  • Who will be leading my child’s overall treatment?

  • What treatment plan do you recommend? Why?

  • What is the goal of each treatment? Is it to eliminate the cancer, help my child feel better, or both?

  • What is the likelihood that the recommended treatment can save my child’s vision?

  • If enucleation is needed, what support services are available to help my child adjust to the partial/total loss of vision?

  • If enucleation is needed, how soon can my child receive a prosthesis (artificial eye)?

  • If recommended, what can I expect chemotherapy to accomplish in the treatment of my child’s cancer? How will chemotherapy be given?

  • If recommended, what are the relative benefits and risks of radiation therapy in treating my child?

  • What are the common side effects of each treatment, both in the short term and long term?

  • How will this treatment affect my child’s daily life? Will they be able to go to school and perform their usual activities?

  • Could this treatment affect my child’s ability to become pregnant or have children? If so, should our family talk with a fertility specialist before cancer treatment begins?

  • If I’m worried about managing the costs of cancer care, who can help?

  • If I have questions or problems, who should I call?

Questions to ask about planning follow-up care

  • What is the chance that the cancer will come back? Should I watch my child for specific signs or symptoms?

  • What long-term side effects or late effects are possible based on the cancer treatment my child received?

  • What follow-up tests will my child need, and how often will those tests be needed?

  • How do I get a treatment summary and survivorship care plan to keep in my child's personal records?

  • If I have questions or problems, who should I call?

  • Who will be leading my child's follow-up care?

  • What survivorship support services are available to my child? To my family?

The next section in this guide is Additional Resources. It offers more resources on this website that may be helpful to you. Use the menu to choose a different section to read in this guide.

Retinoblastoma - Childhood - Additional Resources

Approved by the Cancer.Net Editorial Board, 04/2020

ON THIS PAGE: You will find some helpful links to other areas of Cancer.Net that provide information about cancer care and treatment. This is the final page of Cancer.Net’s Guide to Childhood Retinoblastoma. Use the menu to go back and see other pages.

Cancer.Net includes many other sections about the medical and emotional aspects of cancer for the person diagnosed and their family members and friends. This website is meant to be a resource for you and your loved ones from the time of diagnosis, through treatment, and beyond.

Here are a few links to help you explore other parts of Cancer.Net:

This is the end of the Cancer.Net’s Guide to Childhood Retinoblastoma. Use the menu to choose a different section to read in this guide.