Long-Term Follow-Up and Transition Programs

Transition Off Therapy- (TOT)

The most difficult time for families affected by a cancer diagnosis is hearing the word cancer for the first time.  Secondary to the diagnosis, caregivers report that knowing treatment is coming to an end and wondering what comes next, is almost equally as anxiety provoking.

The Heller Center for Kids with Cancer understands this transition time and has put a formal process in place to answer questions and offer support. 

The Heller Center TOT program targets physical, psychosocial, and practical issues of transitioning off of therapy.

For example, we help families understand and walk them through medical management of; when to call and who to call, follow-up oncology visits,  treatment summary and letter to primary care physician, nutrition and wellness, immunizations, quality of life assessments,  back to work/back to school, and much more. 

The patient will continue to see their primary oncologist for their TOT visit and for the first five years post treatment. TOT visits are completed one month prior to, or within two months of ending therapy. 

  • The TOT program includes a thorough medical consultation with the primary oncologist addressing topics specific to transition back to their primary care physician
  • A binder with information and resources is given to help organize treatment information and resources in one place
  • A visit by members of the Heller team; dietitian, exercise physiologist and psychotherapist to help support and provide specific resources necessary for the transition
  • An end of therapy celebration led by the Child Life Specialist
  • A visit by the social worker to discuss   
  • Medical management; when to call and who to call, follow-up oncology visits
  • A review of any school, career, and education concerns related to transitioning
  • Provides treatment summary,  notes, and letter to primary care physician
  • Nutrition and wellness, immunizations, quality of life assessments, back to work/back to school, and much more. 

Long-Term Follow-Up (THRIVE): (Tools for Health, Resilience, Information, Vitality and Empowerment)

Progress in cancer therapy has made survival into adulthood a reality for most children, adolescents, and young adults.  This growing population is vulnerable to a variety of long-term therapy –related issues. 

Ongoing follow-up of these patients is, therefore, important to provide for early detection of, and intervention for potentially serious late-onset complications. 

In addition, health counseling, psychosocial support, and promotion of healthy lifestyle are important aspects of long-term follow-up care to promote risk reduction for health problems that commonly present during adulthood. 

Both general and subspecialty pediatric health care providers are playing an increasingly important role in the ongoing care of childhood cancer survivors, beyond routine preventive care, health supervision, and anticipatory guidance provided to all patients.

The Heller Center for kids with Cancer realizes this great need and offers the THRIVE appointment to address these needs.

  • Patients are eligible for THRIVE long-term follow-up program once they are 4 years off therapy and they will continue to be seen annually until they are 10 years from diagnosis or relapse, or until they turn 18 years of age, whichever is later.  
  • Our THRIVE clinic is offered twice monthly, and due to the comprehensive level of care offered at this visit, we limit our clinic to five appointments each clinic day. 
  • Patients will have one THRIVE visit each year to evaluate for long-term side effects or other issues related to their cancer and its treatment. If needs are identified, referrals will be made to specialists that will help with the identified concern.
  • The Psychosocial team meets to assess and educate. This  includes: psychotherapists, education liaison, social worker, dietitian, child life, and exercise physiology
  • Health education and resources are provided to help manage long-term deficits or disabilities caused by the disease and/or its treatment.
  • Quality of life and mental health screenings, completed by the Heller psychotherapist, are used to assess for post treatment depression and anxiety.
  • Referrals are made to community based counseling and resources when necessary.
  • Neuropsychological referral may be necessary for cognitive late effects. This appointment is followed up with interpretation, resources and recommendations.
  • School and career support is offered to each THRIVE patient.
  • Financial assessments and resources are available upon request.