STEP 5: Care after initial treatment and recovery

Survivors generally need regular, ongoing, long-term follow-up because treatments for MDS are generally not curative. The survivorship care plan therefore may need to be updated to reflect changes in the patient’s clinical status and psychosocial needs.

The term ‘cancer survivor’ describes a person living with cancer, from the point of diagnosis until the end of life. Survivorship care in Australia has traditionally been provided to patients who have completed active treatment and are in the follow-up phase. But there is now a shift to provide survivorship care and services from the point of diagnosis to improve cancer- related outcomes.

Cancer survivors may experience inferior quality of life and cancer-related symptoms for up to five years after their diagnosis (Jefford et al. 2017). Distress, fear of cancer recurrence, fatigue, obesity and sedentary lifestyle are common symptoms reported by cancer survivors (Vardy et al. 2019).

Due to an ageing population and improvements in treatments and supportive care, the number of people surviving cancer is increasing. International research shows there is an important need

to focus on helping cancer survivors cope with life beyond their acute treatment. Cancer survivors often face issues that are different from those experienced during active treatment for cancer and may include a range issues, as well as unmet needs that affect their quality of life (Lisy et al. 2019; Tan et al. 2019).

Physical, emotional and psychological issues include fear of cancer recurrence, cancer-related fatigue, pain, distress, anxiety, depression, cognitive changes and sleep issues (Lisy et al. 2019). Late effects may occur months or years later and depend on the type of cancer treatment. Survivors and their carers may experience impacted relationships and practical issues including difficulties with return to work or study and financial hardship. They may also experience changes to sex and intimacy. Fertility, contraception and pregnancy care after treatment may require specialist input.

The Institute of Medicine, in its report From cancer patient to cancer survivor: Lost in transition, describes the essential components of survivorship care listed in the paragraph above, including interventions and surveillance mechanisms to manage the issues a cancer survivor may face

(Hewitt et al. 2006). Access to a range of health professions may be required including physiotherapy, occupational therapy, social work, dietetics, clinical psychology, fertility and palliative care.

Coordinating care between all providers is essential to ensure the patient’s needs are met.

Cancer survivors are more likely than the general population to have and/or develop comorbidities (Vijayvergia & Denlinger 2015). Health professionals should support survivors to self-manage their own health needs and to make informed decisions about lifestyle behaviours that promote wellness and improve their quality of life (Australian Cancer Survivorship Centre 2010; Cancer Australia 2017; NCSI 2015).

The transition from active treatment to follow-up care is critical to long-term health. In MDS, this transition is clearer for patients who received time-limited therapy.

For patients who received continuous and ongoing therapies, the transitions can be indistinct,

but these principles may still apply once disease is well controlled and a stable treatment program is established. In some cases, people will need ongoing, hospital-based care, and in other cases

a shared follow-up care arrangement with their general practitioner may be appropriate. This will vary depending on the type and stage of cancer and needs to be planned.

Shared follow-up care involves the joint participation of specialists and general practitioners in the planned delivery of follow-up and survivorship care. A shared care plan is developed that outlines the responsibilities of members of the care team, the follow-up schedule, triggers for review, plans for rapid access into each setting and agreement regarding format, frequency and triggers for communication.

A designated member of the multidisciplinary team (most commonly nursing or medical staff involved in the patient’s care) should provide the patient with a needs assessment and treatment summary and develop a survivorship care plan or a chronic disease management plan in conjunction with

the patient. This should include a comprehensive list of issues identified by all members of the multidisciplinary team involved in the patient’s care and by the patient. These documents are key resources for the patient and their healthcare providers and can be used to improve communication and care coordination.

The treatment summary should cover, but is not limited to:

  • the diagnostic tests performed and results
  • diagnosis including stage, prognostic or severity score
  • disease characteristics
  • treatment received (types and dates)
  • current toxicities (severity, management and expected outcomes)
  • interventions and treatment plans from other health providers
  • potential long-term and late effects of treatment
  • supportive care services provided
  • follow-up schedule
  • contact information for key healthcare

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 follow-up care, as well as the patient’s current and anticipated physical and emotional needs and preferences.

Evidence comparing shared follow-up care and specialised 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 follow-up care can be safely added such as nurse-led models (Monterosso et al. 2019). Other models of follow-up 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 professionals 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 or chronic disease management 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 follow-up 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 relapsed or progressive

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

Care in the initial follow-up phase is driven by predicted risks (e.g. the risk of relapse or progression, developing late effects of treatment and psychological issues) as well as individual clinical and supportive care needs. It is important that follow-up 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. 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

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 Council Australia and states and territories
  • Clinical Oncology Society of Australia – Model of Survivorship Care
  • eviQ – Cancer survivorship: introductory course
  • South Australian Cancer Service – Statewide Survivorship Framework resources
  • American Society of Clinical Oncology –

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 progression or a second primary cancer.

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

Support cancer survivors to participate in research or clinical trials where they are available and appropriate. These might include studies to understand survivors’ issues, to better manage treatment side effects, or to improve models of care and quality of life.

For more information visit:

See validated screening tools mentioned in Principle 4 ‘Supportive care’. Additionally, the ‘Cancer Survivors Unmet Needs (CaSun)’ is another validated screening tool that may help health professionals to identify the unmet needs of patients during survivorship.

A number of specific challenges and needs may arise for cancer survivors:

  • financial and employment issues (e.g. loss of income and assistance with returning to work, and the cost of treatment, travel and accommodation)
  • appointing a substitute decision-maker and completing an advance care directive
  • legal issues such as completing a

For more information on supportive care and needs that may arise for different population groups, see Appendices A, B and C.

Rehabilitation may be required at any point of the care pathway from the pre-treatment phase through to disease-free survival and palliative care (Cormie et al. 2017).

Issues that may need to be dealt with include managing cancer-related fatigue, coping with cognitive changes, improving physical endurance, achieving independence in daily tasks, returning to study

or work and ongoing adjustment to cancer and its consequences.

Exercise is a safe and effective intervention that improves the physical and emotional health and wellbeing of cancer patients. Exercise should be embedded as part of standard practice in cancer care and be viewed as an adjunct therapy that helps counteract the adverse effects of cancer and its treatment.

Cancer survivors may find referral to specific cancer rehabilitation, optimisation programs or community-based rehabilitation appropriate and beneficial. Other options include referral to allied health supports through team care arrangements and mental health plans. Some community support organisations (cancer-related non-government, not-for-profit and charities) provide services to cancer survivors.

The lead clinician (themselves or by delegation) should take responsibility for these tasks:

  • explaining the model of follow-up care and the roles of health professionals involved in follow-up care including the role of general practice
  • explaining the treatment summary and follow-up care plan
  • discussing the development of a shared follow-up and survivorship care plan where a model of shared follow-up care has been agreed
  • discussing how to manage any of the physical, psychological or emotional issues identified
  • providing information on the signs and symptoms of relapsed disease or progression
  • providing a survivorship care plan with information on secondary prevention and healthy living
  • providing contact details of the care team involved
  • providing clear information about the role and benefits of palliative care and advance care

The lead clinician should ensure regular, timely, two-way communication with the general practitioner about:

  • the patient’s progress
  • the follow-up care plan
  • potential late effects
  • supportive and palliative care requirements
  • any shared care arrangements
  • clarification of various roles in patient care
  • a process for rapid re-entry to medical services for patients with suspected recurrence or if there are other concerns.

More information

Refer to Principle 6 ‘Communication’ for communication skills training programs and resources.