Helping Your Child Transition from Treatment to Survivorship

Survivorship care focuses on the long-term wellbeing of individuals with a history of cancer and cancer treatment. As you and your child work with your cancer care team on a transition plan, here are some things to keep in mind that might be helpful.

How will “going back to normal” feel?

During treatment, most parents and caregivers are focused on getting through each day. After treatment, priorities shift as you and your child try to get back to a life that doesn’t revolve around cancer.

Many parents and caregivers are surprised by some of the feelings they experience when cancer treatment is finally over. You might have gotten used to the cancer care team, appointments, tests, medicines, and phone calls. You might have had family and friends supporting you with rides, meals, or other tasks.

People often assume everything should be great now that treatment has ended. However, many people report feeling lost or even abandoned. These feelings are common, normal, and nothing to be ashamed of.

Keep records of your child’s cancer and cancer treatment

Ask your child’s cancer care team for a treatment summary. This document includes information about your child’s cancer and treatment that their health care team and other doctors might need to know in the future. Keep this treatment summary somewhere safe and share with any new doctors your child might see. When your child is an adult, they should also keep these records and share them with their doctors.

Your child’s treatment summary should include:

• Cancer diagnosis (including type, stage, and grade or risk group)
• Pathology report (from tumor, bone marrow, or other biopsy or cytology testing)
• Date of diagnosis and start and end of cancer treatment
• Treatment details
  • Chemotherapy (names, doses, and routes)
  • Radiation (areas treated and total dose)
  • Stem cell/bone marrow transplant (type of transplant, date of transplant, pre-transplant treatments, history of graft-versus-host disease)
  • Surgery (type of procedure and date)
• Reports from x-rays, CT scans, MRIs, or other imaging tests
• Test results for any genetic markers or mutations
• Procedures (such as central line placement, blood transfusions, etc.)
• Complications or side effects during treatment
• Clinical trial number and title if your child was in one
• Names and contact information of the main people on your child’s cancer care team

Learn more about this in Keeping Copies of Important Medical Records.

Survivorship care plans

One thing that can help minimize the stress of transitioning from treatment to survivorship is establishing a clear survivorship care plan with your child’s cancer care team at the end of treatment.

Survivorship care focuses on the long-term wellbeing of individuals with a history of cancer and cancer treatment. This might be with some of the cancer care team your child had before, or it might be with a clinic or team focused on long-term care of childhood cancer survivors. Survivorship care might also be called long-term or follow-up care.

Survivorship care will often include:

• Tests, exams, or scans to check for cancer recurrence
• Assessing for late and long-term physical, mental, emotional, and cognitive effects
• Treatment of late and long-term effects or referrals to specialists
• Mental health and emotional support
• Help with financial and insurance issues
• Monitoring for new second cancers. There might be specific conditions that the care team will want to screen for long-term depending on which cancer treatment was given.
• If needed, referrals to specialists, rehabilitation, fertility counseling, or genetic counseling
• Education and support on healthy lifestyles and reducing risk
  • Nutrition and physical activity
  • Sun safety and skin cancer prevention
  • Tobacco cessation
  • Immunizations
  • Human papillomavirus (HPV) and HPV vaccine
  • Dental care
  • Cancer screening recommendations

Each child’s survivorship plan may differ depending on their type of cancer and cancer treatment.

Most pediatric cancer centers will provide a survivorship care plan at the end of treatment. Each cancer facility has its own version of a survivorship plan, but you can see some examples of plans created by the American Society of Clinical Oncology.

Survivorship care resources

The Children’s Oncology Group (COG) is the world’s largest group of cancer doctors and health providers for children and teens. They offer a free online resource for parents of childhood cancer survivors called the Passport for Care.

COG has also developed long-term follow-up guidelines based on the best research and evidence for children and teens who have been treated for cancer. These guidelines go into more detail on how to prevent, recognize, and manage late and long-term effects of cancer treatments.

To learn more, ask your doctors about the COG survivor guidelines. You can also find them online at www.survivorshipguidelines.org. The guidelines are written for health care professionals, but patient versions of some of the guidelines are available, too (as “Health Links”).

Cancer rehabilitation

Cancer rehabilitation (rehab) is another support resource for childhood cancer survivors. Rehab can help with the long-term effects of cancer and cancer treatment that don’t go away after treatment ends. The main goals of cancer rehab are to:

• Help survivors stay as active as possible and continue doing the things they enjoy
• Decrease side effects and symptoms of cancer and its treatment
• Help survivors stay as independent as possible
• Improve quality of life

Learn more about the specific ways cancer rehabilitation can help survivors of childhood cancer after treatment.

Questions to ask

Here are some additional questions you might want to ask your child’s cancer care team if they aren’t answered in your child’s survivorship care plan:

• Who should I contact first if my child has health issues?
• Are there any medicines my child should or should not take?
• Are there any activities my child should or should not take part in?
• When is the first follow-up appointment and how often after that?
• Will my child have tests or scans done at follow-up appointments?
• What specific late or long-term side effects can occur with the treatments my child had? Can they be managed?
• Are there support groups for children who have had the same type of cancer?
• Are there counselors who specialize in treating children who have had cancer?

Learn about the possible late and long-term side effects of childhood cancer treatment.