After Treatment for Retinoblastoma

During treatment for retinoblastoma, the main concerns for most families are the daily aspects of getting through treatment and beating the cancer. After treatment, the concerns may shift toward the long-term effects of the cancer and its treatment, and concerns about the cancer still being there or coming back.

It is normal to want to put retinoblastoma and its treatment behind you and to get back to a life that does not revolve around cancer. But getting the right follow-up care offers your child the best chance for recovery and long-term survival.

Follow-up exams and tests

For several years after treatment, regular follow-up exams will be very important. The doctors will watch for any signs of the retinoblastoma coming back, as well as short-term and long-term side effects of treatment.

Once treatment is finished, your child's health care team will discuss a follow-up schedule with you, including which tests and exams should be done and how often. Each child will have a unique follow-up plan. It is very important to go to all follow-up appointments. Doctor visits and tests are usually done more often at first. If testing and exams are normal, the time between tests may then be extended.

What to expect during follow up

• Eye exams are very important. Young children may need to be given medicine to sleep (general anesthesia) during the exam so the doctor can check their eyes carefully.
• For children with heritable retinoblastoma, there is a small chance they could get a brain tumor (called trilateral or quadrilateral retinoblastoma). Regular MRI scans of the brain may be done for several years to check for this.

A benefit of follow-up care is that it gives you a chance to discuss questions and concerns that come up during and after your child’s recovery. For example, almost any cancer treatment can have side effects. Some might last only a short time, but others can last longer or might not show up until months or years later. It is important to report any new symptoms, such as pain or vision problems, to the doctor right away, so that the cause can be found and treated if needed.

Ask the cancer care team for a survivorship care plan

Talk with the treatment team about developing a survivorship care plan. This plan might include:

• A summary of the diagnosis, tests done, and treatment given
• A suggested schedule for follow-up exams and tests
• A schedule for other tests that might be needed in the future, such as early detection (screening) tests for other types of cancer, or tests to look for other long-term health effects from the cancer or its treatment
• A list of possible late or long-term side effects from treatment, including what to watch for and when to contact the doctor
• Diet and physical activity suggestions

Staying prepared and organized

As much as you might want to put the experience behind you once treatment is done, it is very important be organized and stay on top of your child’s health. Gathering your child’s records soon after treatment may be easier than trying to get them at some point in the future.

Keep your child’s health insurance

It’s very important to keep your child’s health insurance. It can help cover the cost of follow-up visits, tests, and any care you may need in the future. No one wants to think about cancer coming back, but it’s best to be prepared.

Save your child's medical records

At some point, your child may see a new doctor who doesn’t know their cancer history. Keep copies of their medical records so you can easily share the details of their diagnosis and treatment when needed.

Late and long-term effects of treatment

Because of effective treatments, most children with retinoblastoma will live long lives. But some of the treatments needed to cure the cancer can affect a child’s health later in life. Watching for late effects of treatment as children age is a vital part of their long-term health care. The earlier problems are recognized, the more likely it is they can be treated.

Physical health after cancer treatment

Young people treated for retinoblastoma are at risk for several possible late effects of their treatment. This risk depends on a few factors, such as the stage and type of retinoblastoma and doses of treatment received. It is important to discuss what these health problems might be with your child’s medical team, so you know what to watch for.

Emotional and social health in children and families affected by cancer

Once treatment is finished, a number of emotional concerns can come up. Some of these might occur many years after treatment and can include:

• Dealing with physical changes that can result from the treatment
• Worries about the cancer returning or new health problems developing
• Feelings of resentment for having had cancer, having had to go through treatment, or having health problems when others do not
• Feeling guilty for surviving cancer when other friends with cancer did not
• Concerns about being treated differently or discriminated against (by friends, classmates, coworkers, employers, etc.)
• Concerns about dating, marrying, and having a family later in life

It is normal to have some anxiety or other emotional reactions after treatment, but feeling overly worried, depressed, or angry can affect many aspects of a young person’s growth. It can get in the way of relationships, school, work, and other aspects of life. With support from family, friends, other survivors, mental health professionals, and others, many people who have survived cancer can thrive despite the challenges they have had to face.

Parents and other family members, especially siblings, can also be affected, both emotionally and in other ways. Some common family concerns include financial stresses, job loss or relationship stress during treatment, and worry about cancer returning. Social workers and other professionals at cancer centers can help families access help for these issues. Reach out to your child’s cancer center for help when needed.

To learn more about helping children with neuroblastoma and their loved ones cope during and after treatment, see Childhood Cancer.

Long-term follow-up guidelines

To help increase awareness of late effects and improve follow-up care of childhood cancer survivors throughout their lives, the Children’s Oncology Group (COG) has developed long-term follow-up guidelines for survivors of childhood cancers. These guidelines are used by your doctor to create a survivorship care plan specific to your child and their treatment. They can help you know what to watch for, what types of screening tests should be done to look for problems, and how late effects can be treated.

To learn more, ask your child’s doctors about the COG survivor guidelines. You can also read them on the COG website: www.survivorshipguidelines.org. The guidelines are written for health care professionals, but patient education on some late effects of treatment is available (as “Health Links”) on the site as well.

To learn more about some of the possible long-term effects of treatment, see Late Effects of Childhood Cancer Treatment.