5.2 Follow-up care and survivorship care plan

5.2 Follow-up care and survivorship care plan

Responsibility for follow-up care should be agreed between the lead clinician, the general practitioner, relevant members of the multidisciplinary team and the patient. This is based on guideline recommendations for post-treatment care, as well as the patient’s current and anticipated physical and emotional needs and preferences.

The options for follow-up should encompass the following:

  • A follow-up schedule will be planned based on the patient’s individual circumstances.
  • Investigations should be determined on a case-by-case basis.
  • Most follow-up will involve a history, including updating personal history and enquiry about persistent symptoms that might require investigation to exclude metastatic disease. Family cancer history should be updated.
  • If the patient has previously had genetic testing that revealed an unclassified variant in a cancer predisposition gene, the clinician should liaise regularly with the relevant familial cancer service until the variant is classified as benign or pathogenic.
  • In the case of a pathogenic variant, the clinician should prompt predictive testing in close blood relatives and recommend referral to a familial cancer service.
  • Physical examination, and particularly breast examination and limb circumference measure, should be conducted. Annual mammography (unless the patient underwent a bilateral mastectomy) should be undertaken. In some cases it may be appropriate to also undertake breast ultrasound or MRI.
  • Appropriate follow-up does not involve chest x-rays, bone scans, CT scans, positron emission tomography (PET) scans or blood tests unless the cancer has spread or there are symptoms suggesting metastases.
  • Toxicity related to treatment should be monitored and managed, including bone health
  • and cardiovascular health (Blaes & Konety 2020). There is a significant role for physiotherapy in preventing osteoporosis.
  • Premenopausal women who develop amenorrhoea are at risk of rapid bone loss. There is evidence that oral bisphosphonates are effective in reducing bone loss.
  • Continue to prompt general good health.

Adherence to ongoing recommended treatment such as endocrine therapy should be reviewed and side effects managed proactively to optimise adherence.

Evidence comparing shared follow-up care and hospital-based care indicates equivalence in outcomes including recurrence rate, cancer survival and quality of life (Cancer Research in Primary Care 2016).

Ongoing communication between healthcare providers involved in care and a clear understanding of roles and responsibilities is key to effective survivorship care.

In particular circumstances, other models of post-treatment care can be safely and effectively provided such as nurse-led models of care (Monterosso et al. 2019). Other models of post-treatment care can be provided in these locations or by these health professionals:

  • in a shared care setting
  • in a general practice setting
  • by non-medical staff
  • by allied health or nurses
  • in a non-face-to-face setting (e.g. by telehealth).

A designated member of the team should document the agreed survivorship care plan. The survivorship care plan should support wellness and have a strong emphasis on healthy lifestyle changes such as a balanced diet, a non-sedentary lifestyle, weight management and a mix of aerobic and resistance exercise (COSA 2018; Hayes et al. 2019).

This survivorship care plan should also cover, but is not limited to:

  • what medical follow-up is required (surveillance for recurrence or secondary and metachronous cancers, screening and assessment for medical and psychosocial effects)
  • model of post-treatment care, the health professional providing care and where it will be delivered
  • care plans from other health providers to manage the consequences of cancer and cancer treatment
  • wellbeing, primary and secondary prevention health recommendations that align with chronic disease management principles
  • rehabilitation recommendations
  • available support services
  • a process for rapid re-entry to specialist medical services for suspected recurrence.

Survivors generally need regular follow-up, often for five or more years after cancer treatment finishes. The survivorship care plan therefore may need to be updated to reflect changes in the patient’s clinical and psychosocial status and needs.

Processes for rapid re-entry to hospital care should be documented and communicated to the patient and relevant stakeholders.

Care in the post-treatment phase is driven by predicted risks (e.g. the risk of recurrence, developing late effects of treatment and psychological issues) as well as individual clinical and supportive care needs. It is important that post-treatment care is based on evidence and is consistent with guidelines. Not all people will require ongoing tests or clinical review and may be discharged to general practice follow-up.

The lead clinician should discuss (and general practitioner reinforce) options for follow-up at the start and end of treatment. It is critical for optimal aftercare that the designated member of the treatment team educates the patient about the symptoms of recurrence.

General practitioners (including nurses) can:

  • connect patients to local community services and programs
  • manage long-term and late effects
  • manage comorbidities
  • provide wellbeing information and advice to promote self-management
  • screen for cancer and non-cancerous conditions.
More information

Templates and other resources to help with developing treatment summaries and survivorship care plans are available from these organisations:

  • Australian Cancer Survivorship Centre
  • Cancer Australia – Principles of Cancer Survivorship
  • Cancer Australia – Shared cancer follow-up and survivorship care: early breast cancer
  • Cancer Council Australia and states and territories
  • Clinical Oncology Society of Australia – Model of Survivorship Care
  • eviQ – Cancer survivorship: introductory course
  • MyCarePlan.org.au
  • South Australian Cancer Service – Statewide Survivorship Framework resources
  • American Society of Clinical Oncology – guidelines.

Not smoking, eating a healthy diet, being sun smart, avoiding or limiting alcohol intake, being physically active and maintaining a healthy body weight may help reduce the risk of primary recurrence or a second primary cancer.

Encourage and support all cancer survivors to reduce modifiable risk factors for recurrence as well as other chronic diseases. Ongoing coordination of care between providers should also deal with any comorbidities, particularly ongoing complex and life-threatening comorbid conditions.