STEP 5: Care after initial treatment and recovery

The transition from active treatment to post-treatment care is critical to long-term health. After completing their initial treatment, patients should be provided with a treatment summary and follow- up care plan including a comprehensive list of issues identified by all members of the multidisciplinary team. The transition from acute to primary or community care will vary depending on the type and stage of cancer and therefore needs to be planned. In some cases, people will require ongoing, hospital-based care.

In the past two decades, the number of people surviving cancer has increased. International research shows there is an important need to focus on helping cancer survivors cope with life beyond their acute treatment. Cancer survivors experience particular issues, often different from patients having active treatment for cancer.

Many cancer survivors experience persisting side effects at the end of treatment. Emotional and psychological issues include distress, anxiety, depression, cognitive changes and fear of cancer recurrence. Late effects may occur months or years later and are dependent on the type of cancer treatment. Survivors may experience altered relationships and may encounter practical issues, including difficulties with return to work or study, and financial hardship.

Survivors generally need to see a doctor for regular follow-up, often for five or more years after cancer treatment finishes. The Institute of Medicine, in its report From cancer patient to cancer survivor: Lost in transition, describes four essential components of survivorship care (Hewitt et al. 2006):

  • the prevention of recurrent and new cancers, as well as late effects
  • surveillance for cancer spread, recurrence or second cancers, and screening and assessment for medical and psychosocial late effects
  • interventions to deal with the consequences of cancer and cancer treatments (including manageing symptoms, distress and practical issues)
  • coordination of care between all providers to ensure the patient’s needs are met.

All patients should be educated in managing their own health needs (NCSI 2015).

After initial treatment, the patient, their carer (as appropriate) and general practitioner should receive a treatment summary outlining:

  • the diagnostic tests performed and results
  • tumour characteristics
  • the type and date of treatment(s)
  • interventions and treatment plans from other health professionals
  • supportive care services provided
  • contact information for key care providers.

Care in the post-treatment phase is driven by predicted risks (such as the risk of recurrence, developing late effects and psychological issues), as well as individual clinical and supportive care needs.

Responsibility for follow-up care should be agreed between the lead clinician, the general practitioner, relevant members of the multidisciplinary team and the patient, with an agreed plan that outlines:

  • what medical follow-up is required (surveillance for recurrence, screening and assessment for medical and psychosocial effects)
  • care plans from other health professionals to manage the consequences of cancer and treatment (including assessing psychological distress)
  • a process for rapid re-entry to specialist medical services for suspected recurrence
  • the role of follow-up for patients, which is to evaluate tumour control, monitor and manage symptoms from the tumour and treatment and provide psychological support
  • that they will be retained within the multidisciplinary team management framework.

Follow-up should include access to a range of health professions (if required) including physiotherapy, orthotics, exercise physiology, occupational therapy, nursing, social work, dietetics, psychology and palliative care (in the hospital or community setting).

Specialist team surveillance should include:

  • regular clinical examination and routine surveillance for local recurrence
  • assessing function and possible complications from any reconstruction
  • imaging (includes MRI, CT and functional imaging such as PET, thallium or technetium bone scan)

These should be conducted at the following intervals:

  • three- to four-monthly for two years, then six-monthly for two years and yearly thereafter for four years – giving a total of eight years of follow-up for patients with fully resected disease.
  • In cases where additional surveillance is required, the timing and frequency will be discussed on its merits.
  • Patients should be referred from paediatric services to adult services as they transition between paediatric and adult age groups.

All patients with sarcoma should be offered the opportunity to participate in a clinical trial or clinical research if appropriate (Field et al. 2013).

Cross-referral between clinical trials centres should be encouraged to facilitate participation.

  • Australasian Sarcoma Study Group is a national cooperative cancer clinical research group.
  • It coordinates large-scale multi-centred sarcoma trials.
  • Australian Cancer Trials is a national clinical trials database. It provides information on the latest clinical trials in cancer care, including trials that are recruiting new participants. For more information visit the Australian Cancer Trials website.

Screening with a validated screening tool (for example, the National Comprehensive Cancer Network Distress Thermometer and Problem Checklist), assessment and referral to appropriate health professionals or organisations is required to meet the identified needs of an individual, their carer and family.

In addition to the other common issues outlined in the Appendix, specific needs that may arise at this time include the following.

Physical needs

  • Upper and lower limb lymphoedema may require referral to a trained lymphoedema practitioner.
  • Long-term phantom limb pain may require ongoing pain management.
  • Decline in functional status (particularly from limb reconstruction or amputation) may affect the patient’s mobility and ability to take part in everyday activities. Referral to an occupational therapist, orthotist/prosthetist and a physiotherapist or exercise physiologist for assessment, education, intervention and compensatory strategies may assist with maintaining mobility. These may require prolonged periods of rehabilitation.
  • Healing of underlying structures, infection and other complication risks relating to skeletal implants may require input from wound nurse specialists and infection control specialists.
  • Patients require ongoing nutritional screening, assessment and management. Reduced oral intake and/or swallowing difficulties and weight loss require referral to a dietitian and speech pathologist (for swallowing difficulties).
  • Patients may need treatment for other physical symptoms such as pain, fatigue and musculoskeletal dysfunction.

Psychological needs

  • Disfigurement and scarring from appearance-altering treatment and the need for a prosthesis may require referral to a specialist psychologist, psychiatrist, orthotist/prosthetist or social worker.
  • Patients may need support with emotional and psychological issues including, but not limited to, body image concerns, fatigue, existential anxiety, treatment phobias, anxiety/depression, interpersonal problems and sexuality concerns.

Social/practical needs

  • Ensure the patient attends appointments.
  • Financial issues related to loss of income and additional expenses as a result of illness and/or treatment may require support.
  • Help with legal issues may be required including for advance care planning, appointing a power of attorney, completing a will and making an insurance, superannuation or social security claim on the basis of terminal illness or permanent disability.

Information needs

  • Provide appropriate information for people from culturally and linguistically diverse backgrounds.

Spiritual needs

  • Patients with cancer and their families should have access to spiritual support that is appropriate to their needs throughout the cancer journey.

Rehabilitation may be required at any point of the care pathway from preparing for treatment through to disease-free survival and palliative care.

Evaluation for postoperative rehabilitation is recommended for all patients with extremity sarcoma (NCCN 2016a, NCCN 2016b). Amputees should be referred to a specialist physiotherapist for a comprehensive rehabilitation program. Rehabilitation should be continued until maximum function is achieved (NCCN 2016a) and should be highly integrated with the treating medical team.

Other issues that may need to be addressed include managing cancer-related fatigue, cognitive changes, improving physical endurance, achieving independence in daily tasks, returning to work and ongoing adjustment to disease and its sequelae.

The lead clinician should ensure patients receive timely and appropriate referral to palliative care services. Referral should be based on need rather than prognosis.

  • Patients may be referred to palliative care at initial diagnosis.
  • Patients should be referred to palliative care at first recurrence or progression.
  • Carer needs may prompt referral (Collins et al. 2013).

Early referral to palliative care can improve the quality of life for people with cancer (Haines 2011; Temel et al. 2010; Zimmermann et al. 2014). This is particularly true for poor-prognosis cancers (Cancer Council Australia 2012; Philip et al. 2013; Temel et al. 2010). Furthermore, palliative care has been associated with the improved wellbeing of carers (Higginson 2010; Hudson et al. 2014).

Ensure carers and families receive information, support and guidance regarding their role according to their needs and wishes (Palliative Care Australia 2005).

The patient and carer should be encouraged to develop an advance care plan (AHMAC 2011).

Further information

Refer patients and carers to Palliative Care Australia.

The lead clinician should:

  • offer advice to patients and carers on the benefits of or how to access support from sarcoma peer support groups, groups for carers and special interest groups
  • explain the treatment summary and follow-up care plan
  • provide information about the signs and symptoms of recurrent disease
  • provide information about healthy living.

The lead clinician should ensure regular, timely, two-way communication with the patient’s general practitioner regarding:

  • the follow-up care plan
  • potential late effects
  • supportive and palliative care requirements
  • the patient’s progress
  • recommendations from the multidisciplinary team
  • any shared care arrangements.