Long-Term Follow-Up Clinic

Proper follow-up of long-term survivors requires special knowledge and techniques. These are best provided by trained health care professionals, preferably in clinics devoted solely to meeting the needs of survivors and their families. For many years, a Long-Term Follow-Up Clinic (LTFU clinic) has been run at the Sydney Children’s Hospital, Randwick. This clinic operates separately to the paediatric oncology clinic, so survivors and their families can feel comfortable knowing they are the first priority of clinic staff.

The emphasis at the LTFU clinic is on detecting potential long-term effects and doing everything possible to preserve the good health of survivors. At annual visits to the clinic, a thorough health check is done, results carefully recorded and any late effect concerns discussed. Results obtained at these regular check-ups provide a base line for both the physician and the survivor so that, should any problems develop in the interval between visits, both will be aware of any changes that require further evaluation. A one-off visit would not be sufficient to uncover or detect, for example a new malignant disease, in a survivor who had not experienced any prior symptoms or signs suggestive of this disease. The clinic also encourages survivors to participate in regular screening to help in the early recognition of potential late consequences of therapy.

An important role of the LTFU clinic is to educate survivors about their risks of late effects, as well as how to maintain a healthy lifestyle and avoid risky behaviour such as smoking, alcohol excess or sun baking. As the number of childhood cancer survivors continues to increase, it is also important paediatricians, family GPs and other physicians in the community who care for survivors are aware of the risks of late effects and the benefits of early intervention. An education program in the community is also required.

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)