Your Child Has Relapsed

Your child has relapsed. In the case of neuroblastoma, the guidance of an experienced doctor you trust is absolutely crucial, especially when your child has a relapse. But the more you understand about Neuroblastoma and relapse, the better you will be at making decisions regarding treatment.

Progressive disease means that the neuroblastoma has spread to new sites or the size of the tumor has increased. Relapsed disease means the child has “no evidence of disease”, and then a new site appears.  Both are considered “recurrent.” The length of the time of remission, the location and nature of the disease, the prior treatment, and many other factors must be considered to determine how to treat this new, recurrent disease.

Studies over the past 15 years have shown that the long-term survival rate for high-risk neuroblastoma ranges from 25% to over 40%. For low-risk and intermediate-risk, the percentages are much high for long-term survival. Chemo is becoming much stronger and more intensified, transplant protocols are changing, and new therapies are being introduced with the hopes that relapse can be cured.

What causes relapse? No one has determined what causes Neuroblastoma itself, or relapse. Theories for its cause include:

  • Re-introduction of neuroblastoma cells in contaminated stem cells at rescue;
  • Neuroblastoma cells “hiding” in sanctuary sites such as brain or testes; and
  • Neuroblastoma cells becoming resistant during frontline therapy.

By far the most common sites for relapse are bone and bone marrow, and sites not involved at first diagnosis (such as brain and lungs) are seen in up to 8% of relapsed children.

For about two years after finishing neuroblastoma treatment, a child does follow-up tests and scans every three months, then every six months and eventually none. Each hospital determines the schedule of monitoring.  When your child is done with the monitoring, it’s always wise to still pay attention to symptoms. Neuroblastoma relapse can give off the same symptoms as a host of other illnesses.

If your child starts to complain of pain and it remains there for more than 3 days, consult your pediatrician or oncologist. Try to keep a notebook to log information such as where, when and how long the pain persists.

Just as with first diagnosis, relapse is not always obvious. Some neuroblastoma relapses have no symptoms and are discovered by routine follow-up tests and scans; others times it may be the same symptoms that they had at diagnosis, or it can be totally new symptoms not present before (as with headaches in brain relapses).

Neuroblastoma relapse must be absolutely proven before treatment can proceed, because some secondary cancers can resemble neuroblastoma, and correct treatment must be given. Sometimes the treatment a child received at diagnosis, may not be the treatment needed the 2nd time.

If relapse is confirmed, many of the same staging, pathology and genetic tests done at first diagnosis are performed, as well as baseline tests for heart, hearing, and other organ function.

After the whirlwind of scans, tests, and line placement, chemotherapy is begun. Depending on the relapse scenario, children very often respond to chemo again, especially if relapse occurs after more than one year of remission.

However, relapse after high-risk treatment is a different scenario from first diagnosis. At first diagnosis a well-defined road map of the front line protocol is provided, but with relapse there is generally no set treatment path. Some doctors even list “no treatment” as one of the options. Relapse treatment is usually very individualized – and parents are generally expected to participate in the process of determining what treatment plan is best for the child.

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