Long-term Follow-up Care for Brain Tumors (Central Nervous Tumors)


Long-term follow-up for children’s cancer survivors typically begins when patients are in remission and fully recovered from the immediate effects of treatment.  Often, this is about two years after completion of treatment. In long-term follow-up, the goal is to help former patients stay as healthy as possible and to do well in school and eventually at work.  It is important for all survivors to continue to have regular medical care for life.  This is often called survivorship care.  There are various ways that survivorship care may be provided in your community, including:

  • The same doctor or clinic where the original cancer treatment was given
  • A specialized Long-Term Follow-Up Program for children’s  cancer survivors
  • A healthcare provider in the local community (often working in partnership with the original treatment center)
  • Long-term follow-up clinical care provided by a nurse practitioner

No matter where survivorship care is received, it is important for survivors to ask questions to make sure they know about the treatment they received and the specific follow-up care they need to stay in the very best possible health.

The Children’s Oncology Group has specific guidelines for the types of monitoring needed depending on the cancer treatment that was given.  These guidelines are designed to begin two or more years after the completion of cancer treatment.  Ideally, survivorship care will be provided by specialists in survivorship medicine who understand the unique needs of children’s cancer survivors.  However, when a survivorship program is not available, a local primary care physician can work in partnership with the original treatment center or other long-term children’s cancer specialists to provide the recommended follow up care. 

Accessing a Long-term Follow-up Healthcare Provider

Ask your child’s attending physician or nurse practitioner about survivorship care to learn when and how your child will receive this type of follow-up.  If your child is no longer followed in a pediatric treatment center, you may want to call a pediatric cancer treatment center near where you live to find out if they have a survivorship care program.  Or you may want to use the Internet.

Frequency of Long-term Follow-up Care

Most children’s cancer survivors need long-term follow-up visits once a year, although the schedule may vary considerably depending on individual circumstances.  Talk with your child’s healthcare provider about the monitoring your child needs to make a plan for long-term follow-up visits.  Long-term follow-up visits should include a comprehensive review of the survivor’s overall health and specific tests based on your cancer, the treatment you have received and any side effects of radiation, chemotherapy or surgery. The Children’s Oncology Group has developed Long-Term Follow-Up Guidelines.

Medical Care between Long-term Follow-up Visits

Children’s cancer survivors should identify a local primary healthcare provider that they can visit or call for routine illness or injuries.  Care for routine illness or injury is not the focus of the survivorship program or the pediatric oncology team.  If you have a new healthcare provider, make an appointment for a check-up with them so that they can get to know you before an illness occurs.  Bring a treatment summary with you to assist them in placing your illness in context.  If a problem comes up that may be related to cancer treatment, the primary healthcare provider can discuss this with the long-term follow-up team.

The Treatment Summary

In order for a healthcare provider to determine what follow-up care a survivor needs, it is important to have a summary of the treatment that was given.  The survivor or their parents should ask for a treatment summary from the hospital or clinic where they received their cancer treatment.  The treatment summary should be kept in a safe place, and a copy should be given to all healthcare providers involved in the survivor’s care (for example, your family doctor, your pediatrician, any specialists).

A Cancer Treatment Summary should contain the following information:

  • Name of the disease that your child had, and the date he or she was diagnosed and completed all cancer treatment
  • Date and description of any relapses 
  • Name, address and phone number of hospital or clinic where your child received care
  • Name, address and phone numbers of your cancer doctor (oncologist) and other health team members responsible for your child’s care
  • Names of all the chemotherapy drugs that your child received and how they were given (such as by mouth or into a vein)
  • Total (cumulative) doses of certain chemotherapy drugs and the dates the first dose of each was given
  • Name and dates of any surgeries that your child had, and the name of the surgeon
  • Dates, areas , total doses and number of treatments (fractions) of any radiation your child received
  • Name, address and phone number of the doctor supervising your child’s radiation treatments
  • Dates and types of any bone marrow or stem cell transplant and the name, address and phone number of the doctor supervising the transplant
  • Type of conditioning (chemotherapy and/or radiation) received for bone marrow or stem cell transplant
  • Blood products received, and date your child received the first blood product
  • Names and dates of any significant complications, and treatments received for complications
  • Current medications
  • Major side effects (such as kidney or heart injury)
  • The number and location of previous central lines 

Late Effects

Problems related to cancer treatment that occur or persist after treatment is completed are known as "late effects."  If late effects do occur, recognizing them early gives the best chance of providing treatment that will help your child.  This is why ongoing follow-up care for children’s cancer survivors is so important.   

 

The First Month off Treatment
Two to Six Months off Treatment
Six to Twelve Months off Treatment
One Year off Treatment and Beyond
Young Adults Transitioning to Adult-Focused Care


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