After the treatment of children with retinoblastoma, parents would expect them to be able to live a normal life. In reality, parents shouldn’t expect this to be 100% true, even with the modern medicinal advances; staying positive is important, because there can be negative long term effects. Perpetual follow-ups for the child is needed in order to monitor their behavior after the surgery and make sure the child isn’t having any problems

Treating a child with retinoblastoma involves a very focused approach but the follow up treatments and proper care are just as essential as the surgery itself. In these types of scenarios, It is always best to identify the problem at the earliest possible time to assure proper treatment is effective. It is possible, though, to have complications after the surgery.

According to American Cancer Society: Long-term and late effects depend of a few different factors:

(1) The child’s age upon treatment

(2) The specific treatments used

(3) The doses of treatments.

The late effects of treatment may also include the following:

  • A possible reduction or loss of vision in the affected eye or eyes
  • Possible heart problems caused from certain chemotherapy drugs
  • Slowed or delayed growth and development
  • There is a change in sexual development and ability to have children
  • Especially in children with hereditary retinoblastoma, increased risk of other cancers
  • Occurs especially after surgery or external radiation, deformities in the bones around the eye
  • Kidney function reduced

It is possible that other complications may occur from treatment. As this may happen, the child’s doctor should carefully review any possible problems with the parent.

Follow Up Care: Long-term Plan

The follow-up care of a child with retinoblastoma begins with a child in a remission and fully recovered from the immediate effects of treatment. Take note of “cancer remission.” There is partial remission which means that there’s still the presence of cancer but the tumor has become smaller. Complete remission which means that all signs of cancer are gone as a result of the tests, physical exams, and scans. Often, completion of treatment is about two years after completion of surgery or therapy.

The main goal of long-term follow-up care is to help the former patients live a normal life by staying healthy as possible, being in school and feeling well. This is the reason why it is very important to have all survivors continue with regular medical care, also called survivorship care.               

The Children’s Oncology Group (COG) has developed long-term follow-up guidelines for survivors of childhood cancers. This to help increase awareness of late effects and improves follow-up care of childhood cancer survivors throughout their lives. By following these guidelines, parents and family members can know what to look out for, what type of screenings should be done to look for problems, what to do about late effects, and how they can be treated.

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Sara T. Loving

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