After Neuroblastoma Treatment

During treatment for neuroblastoma, most patients and their families are focused on getting through treatment and beating the cancer. After treatment, the focus shifts to long-term effects of neuroblastoma and its treatment, as well as worries about the cancer coming back.

It is normal to want to put neuroblastoma and its treatment behind you and 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, it is important to have regular follow-up exams with the cancer care team. The doctors will watch for signs of cancer and side effects of treatment. Doctor visits will be more frequent at first, but the time between visits may get longer as time goes on.

Checkups after treatment for neuroblastoma include careful physical exams, lab tests and imaging tests (MIBG scans, PET scans, ultrasound, CT scans, and/or MRI scans) to see if there is any tumor remaining. The tests done will depend on the child's risk group, the size and location of the tumor, and other factors. If the tumor comes back or does not respond to treatment, your doctors will discuss the treatment options available.

Because there is a chance that the cancer might return after treatment, it is important to go to all follow-up appointments and to report any new symptoms to your child’s doctor right away. As time goes by, the risk of recurrence goes down. However, routine doctor visits are still important because some side effects of treatment might not show up until years later. A benefit of follow-up care is that it gives you a chance to discuss any questions and concerns that arise during and after recovery from cancer treatment.

Ask the cancer care team for a survivorship care plan

Talk with your child’s doctor 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 your child might need in the future, such as early detection (screening) tests for other types of cancer, or tests to look for long-term health effects from neuroblastoma or its treatment
• A list of possible late or long-term side effects from your child’s treatment, including what to watch for and when to contact the doctor
• Diet and physical activity suggestions

Keeping records of health insurance and your child’s medical care

As much as you might want to put the experience behind you once treatment is done, it is important to keep good records of your child’s medical care during this time. Eventually, your child will grow up, be on their own, and have new doctors. Gathering these details soon after treatment may be easier than trying to get them at some point in the future.

Ask the cancer care team where and how to get this information. Learn more in Keeping Copies of Important Medical Records.

It is also important to keep health insurance coverage. Tests and doctor visits can cost a lot, and even though no one wants to think of cancer coming back, this could happen.

Late and long-term effects of treatment

Neuroblastoma can cause long-lasting side effects. Most of the long-term side effects depend on what kind of treatment a child had, where the tumor was located, and how old the child was when treated. Children who received several kinds of treatment (surgery, radiation, chemotherapy, immunotherapy, etc.) are more likely to have serious long-term side effects.

Physical health after cancer treatment

Because of major advances in treatment, many children treated for neuroblastoma are now surviving into adulthood. Doctors have learned that the treatment can affect children’s health later in life, so watching for health effects as they get older has become an important part of cancer survivorship.

Neuroblastoma survivors may be at risk for several possible late effects from their treatment. It is important to discuss what these possible effects might be with your child’s medical team.

Emotional and social health in children and families affected by neuroblastoma

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 or 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 child’s 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.

Can we lower the risk of neuroblastoma progressing or coming back?

If your child has (or has had) neuroblastoma, you probably want to know if there are things you can do that might lower the risk of it growing or coming back, such as having them eat a certain type of diet or take nutritional supplements. Unfortunately, it is not yet clear if there are things you can do that will help.

As your child gets older, adopting healthy behaviors such as not smoking, eating well, getting regular physical activity, and staying at a healthy weight might help, but no one knows for sure. However, we do know that these types of behaviors can have positive effects on your child’s health that extend beyond their risk of cancer.

About dietary supplements

So far, no dietary supplements (including vitamins, minerals, and herbal products) have been shown to clearly help lower the risk of neuroblastoma progressing or coming back. This does not mean that there are no supplements that can help, but it is important to know that none have been proven to do so.

To learn more, see Are Dietary Supplements Safe?