One Year off Treatment and Beyond for Ewing Sarcoma


The “one year off therapy anniversary” is a significant time for many families.  Blood counts and immune system have recovered, and hair has returned if it is going to.  Children usually have more energy and may be experiencing “catch up” growth.  For many children, there is no longer any physical evidence of cancer treatment, but for others the lasting effects of cancer treatment may now be apparent.

Returning to the Clinic

The focus of clinic visits during the second year after treatment ends will be slightly different.  The intervals between visits lengthen.  The healthcare team will continue to monitor your child for any signs of the cancer coming back.  Blood counts will be checked, and children treated for solid tumors will continue having scans to confirm remission.  The healthcare team will also concentrate on restoring your child to a state of good health.  Talk with your healthcare provider about your child’s specific follow-up plan.  After 2 to 5 years, your child’s care may be transitioned to a long-term follow-up clinic.

Talking to Your Child about Cancer

As your child grows up, the amount of information he or she needs about his or her illness and its treatment increases.  Often, children were too young to remember much about the treatment period.  It can be tempting to try to protect your child by not sharing more information about the illness.  Open communication between you and your child allows your child to understand why he or she still needs to come to clinic for appointments even when they are well.

Challenges in School

School difficulties may not appear for years after treatment is completed.  Any academic difficulties should be discussed with the healthcare provider, healthcare team, school psychologist or reintegration specialist, and your child’s school.

Treatment to control or prevent spread of cancer to the brain and/or spinal cord may affect memory and learning abilities.  If your child received this type of treatment, let the teacher, principal and school counselor know.  Some parents and teachers report that children who received therapy to the central nervous system may have difficulty concentrating.  The brain is a very complex structure that continues to grow and develop throughout childhood, adolescence and young adulthood.  Neuropsychological testing may help identify learning strengths and weaknesses and help the school give your child the extra help and support to reach his or her full educational potential.  While school psychologists are experts at evaluation of children with learning challenges, they rarely see children who have been treated for cancers.   If your child is having difficulties academically after treatment ends, we encourage an evaluation by a psychologist with experience working with children who have cancer.

The following can sometimes increase the risk of educational problems:

  • A history of learning problems before the diagnosis of cancer
  • Frequent or prolonged school absences
  • Treatment that has affected hearing or vision
  • Treatment that results in physical limitations
  • Treatment of the brain and spinal cord – including radiation or intrathecal chemotherapy (chemotherapy given directly into the spinal column)

Maintaining Healthy Weight

The effects of children’s cancer and treatment on appetite and physical activity are different for each child.  The aim is to help your child stay healthy and to perform well in school, play or at work.  Most children will begin to gain weight once treatment is ended, and as a parent, this will be very reassuring. However, some children may gain weight at an unhealthy rate while others may have trouble gaining weight at all. If your child experiences any weight or nutritional issues please discuss this with your healthcare team. Meeting with a dietician may also be helpful.  A healthy diet and physical activity have many benefits for children who have had treatment for cancer including:

  • Helping tissues and organs that have been damaged by the cancer and treatment to heal
  • Building your child’s strength and energy level
  • Reducing the risk of developing certain types of adult cancers and other diseases in adult life
  • Reducing feelings of stress and increasing feelings of well-being

It is important to combine healthy eating with physical activity. In general, a healthy lifestyle includes not smoking; eating a low fat, high fiber diet; exercising regularly and avoiding excessive alcohol intake.

Outdoor Precautions

Children and teens should be encouraged to fit some outdoor physical activity into their daily routine. Remember to protect children from sunburn when the skin is exposed to the sun even on cloudy or hazy days.

  • Use cover-up clothing and sunscreen with a high SPF (35 or higher)
  • Sand, snow, concrete, water and high altitudes all increase the risk of sun damage. Take extra caution to protect your skin in these environments
  • Discourage your child from tanning; avoid tanning booths
  • Avoid outdoor activities from 10am-2pm when sun rays are most intense
  • Plan outdoor activities in the morning or late afternoon hours
  • Re-apply sunscreen every few hours while outside, especially when swimming

Children who Underwent Bone Marrow Transplantation

For children who have received a stem cell transplant, some parts of recovery will be different.  This is because after a stem cell transplant, it can take longer for full immunity to return.  This time period is different for each child and will depend on:

  • The type of transplant received (for example, if the donor was a family member or an unrelated donor)
  • How quickly the new bone marrow starts working
  • Whether your child has to take extra medicine to suppress immunity  
  • Whether your child experiences graft-versus–host disease 

Children who have total body irradiation as part of the preparation for their bone marrow transplant may have side effects that do not become evident until treatment ends.  Because of the intensity of this treatment and the longer recovery period, your child may continue to be cared for by the transplant team for quite some time.  His or her healthcare team will be able to tell you when it is safe for your child to return to normal activities, and will also let you know when your child may go back to his or her primary oncologist or to a long-term follow-up clinic for care.

Is Follow-Up Forever?

The length of follow-up depends on the treatment received and any lasting effects your child has experienced.  The Children’s Oncology Group recommends monitoring childhood cancer survivors into adulthood.  Recommendations for follow-up are based upon the most current medical knowledge available and are likely to change over time.  Testing may include blood work or scans.  Your healthcare provider will talk with you about the testing and follow-up your child will need.

Transition

The process of moving from one situation or place to another is called “‘transition.”  In children’s cancer, transition means moving from the pediatric oncology team that cared for your child during treatment to a long-term follow-up clinic or primary care provider who will care for him or her as a survivor of childhood cancer.

Long-term follow-up care varies in each cancer center.  At some centers, this may mean moving to a different health care provider or a different clinic or hospital when off treatment for 2 years to 5 years after diagnosis.  Other cancer centers continue to provide care for patients indefinitely.  Still others have clinics especially for adult survivors of children’s cancer.  Your healthcare provider will discuss any transition your child may have in the future, and help to ensure that any transitions go as smoothly as possible.

You and your healthcare provider can help your child get ready for a transition by:

  • Encouraging your child to learn about their cancer and the treatment that they received
  • Explaining why follow-up is needed
  • Encouraging your child to ask questions
  • Ask for a written summary of your child’s treatment and follow up plan

 

The First Month off Treatment
Two to Six Months off Treatment
Six to Twelve Months off Treatment
Young Adults Transitioning to Adult-Focused Care
Long-Term Follow-Up Care  


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