The PICS Long Term Follow-up Program (LTFP)

Logo of Victoria's Paediatric Integrated Cancer Service (PICS)

PICS runs the Long Term Follow-up Program (LTFP) to help children and adolescent survivors of cancer stay healthy years after treatment.

Some cancer treatments can cause other health issues. Some of these can occur during treatment, while others can show up years later. We call these post-treatment related health issues ‘late effects.’

In Victoria, PICS runs the LTFP to help children and adolescents monitor and manage the potential long-term impacts of their cancer diagnosis and treatment. We do this by:

    • running clinics that provide a medical, nursing, and allied health service tailored to each child/adolescent’s current and ongoing needs
    • helping patients and their families to safely transition to adult community and/or hospital services
    • developing a unique survivorship roadmap to inform the child/adolescent’s future healthcare needs
    • empowering patients to advocate for their own medical needs/concerns once discharged into adult care.

The program is available to all paediatric and adolescent survivors of childhood cancer living in Victoria. To date, the LTFP has supported more than 2000 people following treatment for paediatric cancers.

LTFP clinics are held at The Royal Children’s Hospital (RCH), Monash Children’s Hospital (MCH), and designated regional centres with the support of the PICS Regional Outreach and Shared Care Program.

Quick links
Read the LTFP brochure for patients, carers, and families
View the LTFP pathway
View the LTFP model of care
LTFP referral form (MCH)
LTFP referral form (external)
Email the LTFP team
Call the LTFP team on 03 9345 9152

Long Term Follow-up Program FAQs

Watch the video below, or click on the questions to answer frequently asked questions about your journey with the LTFP. You can also read the LTFP brochure for patients, carers, and families for more information.

Long Term Follow-up Program (Q&A for kids)

Play video

Your paediatric oncologist will refer you to the LTFP 2–5 years after your treatment finishes. Other health professionals monitoring your health after treatment, like a general practitioner (GP), can also refer you into the LTFP before this point. If you notice any changes in your health, notify your doctor.

Referrals happen internally at RCH, and a referral form is available for patients treated at MCH. There is a separate form for external referrals by other healthcare providers, such as a GP. The forms are available in both PDF and Word formats.

The LTFP also accepts self-referrals.

Once you are referred to the LTFP, you will be sent a letter providing more information about the program.

You will separately be sent a letter confirming your first appointment date at an LTFP clinic. This first appointment usually takes place around 12 months after referral. LTFP clinics are held at RCH, MCH or (where appropriate) at a regional centre closer to where you live.

Approximately 1 month before your appointment, you will receive a link to complete a pre-clinic questionnaire about your current health as a cancer survivor. Questionnaires get filled out before appointments, as they to give us a more complete picture of your situation in your own words. This helps us to make the clinic a tailored ‘one-stop’ clinical service to meet your various needs on the day. The questionnaire also gives our team an opportunity to address any questions or concerns that patients and families may have ahead of their appointments.

Read the LTFP pathway to learn more about what happens once cancer treatment finishes, including an overview of when patients get referred to the LTFP, and what to expect when you are part of the program.

The PICS LTFP clinics are held at the RCH and MCH in Melbourne, and at designated regional centres as part of the PICS Regional Outreach and Shared Care Program (ROSCP):

Your clinic appointment will be designed around you and your individual needs, with times scheduled with the health professionals you need to see. Please be prepared to be at the clinic for 2–3 hours. If a specialist relevant to your needs is not available through the LTFP clinic, we can help to arrange a referral.

At the clinic, our team will look at your medical history and current state of health. You might have to have some medical tests as well. The team will talk to you about their recommendations for follow-up care, including options for joint care with your GP and other specialists. You may also be invited to take part in clinical research studies.

As part of our program, ‘Time alone’ is introduced to adolescents, as appropriate, from the time they begin secondary school. This is to encourage development of health awareness and build confidence in interactions with health professionals. It also provides an opportunity to have a confidential conversation about health needs.

Following your appointment, the LTFP team will give you information such as:

    • a summary of your LTFP clinic visit
    • a summary of your treatment received, from diagnosis to end of treatment
    • a roadmap that outlines recommended tests and follow-up for your ongoing healthcare
    • LTFP contact details.

After your medical review, the team will let you know about your next follow-up appointment. This may be at 6–24 months after your review, depending on your health needs. If you only need to see us every 2 years, we recommend seeing your GP for a general check-up approximately 12 months after your last LTFP clinic appointment.

If you notice any concerning changes in your health, or have any medical queries before your next appointment, please contact your healthcare provider.

It is important to remember that, while the LTFP is here to help you monitor and manage your health, having a healthy life after treatment includes looking after your overall health on a day-to-day basis.

When you have completed high school or reach 18–21 years of age, you will be transferred to a clinical service that is best for your care. This will depend on the intensity of treatment you received and your current medical condition.

If you have questions or need to reach the team, you can call us on (03) 9345 9152 or email ltf.program@rch.org.au.

PICS resources and information

We work with patients, families, and health professionals to develop resources that provide reliable information, helpful suggestions, and practical advice across a range of topics. They cover the childhood cancer care journey and are available in a variety of formats, such as factsheets, videos, and handbooks.

Check out some of our highlighted resources for childhood cancer survivors on our coming off treatment and survivorship page.

Alternatively, you can explore our full resources library.

Other helpful resources and information

In addition to our resources, below is a collection of links to external services, supports, and other information that may be helpful for LTF patients or those supporting them.

Our other helpful information page contains more external links. These links are not specific to LTF patients, but cover more topics that may be of interest.

Victorian Tertiary Admissions Centre (VTAC) supports

Health links

Resources by the Children’s Oncology Group (COG), USA.

Immunisation guideline

Information for GPs

Female

Male

Resources by The Royal Children’s Hospital (RCH), Melbourne.

For young people

For parents and carers

From the Australian Cancer Survivorship Centre (ACSC).

Projects

Contact