Long Term Follow Up Clinic


Psychological and social issues

Survivors and their families may experience a range of new feelings as the focus shifts from diagnosis, to survival, to late effects. These feelings may include stress around testing for recurrent cancers or late effects, or even anxiety about coming back to the Hospital to see their doctors. Although many survivors cope well, some may experience intense anxiety or even post-traumatic stress disorder (PTSD). If you have concerns about yourself or your child, it is best to talk to your health-care provider so the best possible treatment can be offered. 

Other psychosocial issues experienced by survivors may include those related to school performance, occupational training, employment opportunities, or relationships. Some survivors find they have difficulty obtaining insurance, or gaining apprenticeships, scholarships or acceptance at universities. If your child experiences any difficulties with education, jobs, employment or pensions, it is very important to tell your treating team. The Hospital’s long-care follow-up team will act as advocates for your child to ensure they do not suffer discrimination as a result of being a survivor of cancer. The team is available to help with any concerns you have and will offer whatever support or assistance they can to help address the issues at hand.

Key staff at the LTFU clinic include a Nurse Coordinator, a Paediatric Oncologist and various psychosocial personnel including Social Workers and a Psychologist. Physicians from related disciplines such as radiation oncology, cardiology, pulmonary medicine, orthopaedics, neurology and endocrinology are also associated with the team to help evaluate any specific problems identified in survivors.

The ‘Health Passport’

When a survivor first attends the LTFU clinic, he or she will receive a complete record of the cancer treatment they received while at the Hospital. The summary (referred to as the ‘health passport’) contains valuable information about the cancer, the stage of disease and precise details of any surgery, radiation and chemotherapy given, including doses. Based on the treatment summary, appropriate testing and follow-up care can be planned to monitor for any potential late effects.

Your Health Passport

Your copy of the ‘health passport’ must be kept in a safe place, and a photocopy given to each new medical practitioner you consult. In this way, you are helping ensure your medical carers know what treatment was given and can take this into account when interpreting any new signs or symptoms that present themselves.

Risk-based follow-up

The risks of late effects are directly related to the treatment received. Almost all treatment protocols have changed over the years and therefore follow-up guidelines are therapy based, rather than disease based. Examples of long-term follow-up guidelines developed by the Children’s Oncology Group can be seen on the web site www.curesearch.org. Using these guidelines, each survivor will have a long-term follow-up plan drawn up specifically tailored to their needs, taking into account their exposures and risk factors.

How long do I need to attend the LTFU clinic?

Many long-term side effects of cancer and treatment only become obvious with growth, maturation and aging. It is important to provide continual follow-up for long-term cancer survivors, as many potentially more serious late effects may not manifest until many years after treatment ends. The rate of secondary malignancies (second cancers) can present many years after treatment, while cardiotoxicity (heart damage) can develop 20 years after treatment.

Following survivors into, and throughout, their adulthood provides an opportunity for ongoing health education and cancer screening. To provide maximum benefit, follow-up needs to be life-long.

Research into late effects

The first priority of the LTFU clinic is to provide a service to survivors. In addition however, the clinic offers a unique and important research opportunity. Growing awareness of the potential consequences cancer therapy can have has led to adjustments being made to the way therapy is given, such as changes to drug doses, or where or how often radiotherapy is given. These adjustments have been made to improve the quality of life of survivors. It is vital that Oncologists keep learning as much as possible about late effects so therapy can continue to be adjusted and improved, to the benefit of all future patients.

To conduct research into late effects of survivors of childhood cancer, the Long-Term Follow-up Project was created. This project is a close collaboration between clinicians looking after the patients in the LTFU clinic at the Sydney Children’s Hospital, Randwick (SCH) and medical researchers at Children’s Cancer Institute Australia (CCIA). The project is providing a unique opportunity to combine expert clinical care with state-of-the-art molecular research to examine the long-term effects of cancer and cancer-related therapies. It is hoped this research will provide valuable information that ultimately helps minimise, or even prevent, late effects in survivors.

Tips for leading a healthy lifestyle

  • Eat a healthy diet
  • Exercise regularly
  • Choose not to smoke
  • Avoid risky behavior
  • For women: do monthly breast self exams and see your gynaecologist yearly
  • For men: do monthly testicular exams and have regular prostate screening
  • Avoid drugs and alcohol
  • Practice safe sex
  • See your dentist every six months
  • See your primary physician once a year
  • Limit your sun exposure and always use sunscreen
  • Care for your mental health
  • Have your colon screened regularly (colonoscopy)