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, women 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. Transition from acute to primary or community care will vary depending on the type and stage of cancer and needs to be planned. In some cases, women will require ongoing, hospital-based care.
In the past two decades the number of women 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 women 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 followup, 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 management of symptoms, distress and practical issues)
- coordination of care between all providers to ensure the woman’s needs are met.
All women should be educated in managing their own health needs (NCSI 2015). If the woman is a smoker, provide information about smoking cessation.
After initial treatment, the woman, the woman’s nominated 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.
Responsibility for follow-up care should be agreed between the lead clinician, the general practitioner, relevant members of the multidisciplinary team and the woman, with an agreed plan documented that outlines:
- what medical follow-up is required (surveillance for cancer spread, recurrence or secondary cancers, screening and assessment for medical and psychosocial effects)
- care plans from other health professionals to manage the consequences of cancer and treatment
- a process for rapid re-entry to specialist medical services for suspected recurrence.
No definitive agreement exists on the best post-treatment follow-up. The options for follow-up should be discussed at the completion of the primary treatment. Some women will decide that the psychological trauma of follow-up is too unsettling and opt to attend follow-up visits only if they have symptoms. Some women may opt out of specialist follow-up. Others will be keen for surveillance, even though some may experience anxiety prior to the follow-up visits.
The following recommendations are based on expert advice from the Cervical Cancer Working Group:
- Clinical review including vaginal examination should take place.
- Vaginal vault cytology* and imaging should be performed as clinically indicated with an annual co-test (HPV and cytology). For example: three-monthly for the first two years, six-monthly in the
- third and fourth year, with a final review at five years. Thereafter, all women should have an annual co-test with a general practitioner.
- CT, MRI or PET/CT scan should be performed as clinically indicated (ESMO Guidelines Working Group 2012).
- Access to a range of health professionals may be required, including providing an end-of-treatment care plan.
Special circumstances
Following fertility preserving surgery:
- In year 1 of follow-up, a colposcopy is recommended every three months. Cytology and HPV testing (co-test) at 12 months.
- In year 2 and 3 of follow-up, a six-monthly colposcopy is recommended. An annual co-test is recommended for all women.
- In year 4 and 5 of follow-up, an annual colposcopy is recommended. An annual co-test is recommended for all women.
- Women should be advised to consider a hysterectomy when fertility is no longer required.
Following primary chemoradiation treatment:
- *Cytology should be avoided following treatment unless clinically indicated because of the high rate of false-positive results.
Participation in research and/or clinical trials should be encouraged where available and appropriate. Cross-referral between clinical trials centres should be encouraged to facilitate participation.
For more information visit Australian Cancer Trials.
Treatment-related loss of fertility and menopause (NBCC & NCCI 2003) requires sensitive discussion. The risk of early-onset menopause continues after chemotherapy and radiotherapy and not only immediately following treatment.
Women considering pregnancy after fertility-sparing treatment should have pre-pregnancy counselling and a formal cervical length assessment, which may require management before attempting pregnancy.
Ongoing assessment and management of (including hormonal therapy) for treatment-related menopause is required. Symptoms associated with treatment-induced menopause include night sweats, hot flushes, reduced libido and those related to reduced bone density. Symptoms, particularly vasomotor, may be more severe compared with women who go through natural menopause.
Radiation-induced vaginal toxicity (such as vaginal shortening and dyspareunia) can have a significant impact on sexual quality of life in these patients.
The lead clinician should provide the woman and carer with information about managing menopausal symptoms and other long-term side effects post chemoradiotherapy, including the use of hormonal therapy.
Referral to a social worker, menopause expert, fertility specialist, psychosexual counsellor, psychologist or psychiatrist may be appropriate, especially for younger women.
Screening using a validated screening tool, assessment and referral to appropriate health professionals and community-based support services is required to meet the needs of individual women, their families and carers.
In addition to the common issues outlined in the Appendix, specific issues that may arise include:
- treatment-related side effects including loss of fertility, sexual dysfunction and menopause, which require sensitive discussion and possible referral to a clinician skilled in this area
- maintaining vaginal health, managing dryness, bleeding, stenosis, dyspareunia, atrophic vaginitis, fistulas and pain as well as prevention of treatment-induced vaginal stenosis through early referral to a specialist nurse or women’s health physiotherapist for advice
- comorbidities where treatment for depression is required
- coping with hair loss (refer to Look Good, Feel Better; see ’Resource List’)
- malnutrition risk as identified by a validated malnutrition screening tool or unintentional weight loss of greater than five per cent of usual body weight
- lower limb lymphoedema and lymphadenectomy, a common treatment side effect in women with gynaecological cancers (NBCC & NCCI 2003) that can restrict mobility (referral to a
- physiotherapist or trained lymphoedema massage specialist may be needed) (Beesley et al. 2007)
- physical symptoms including pain and fatigue
- bladder or bowel dysfunction, gastrointestinal or abdominal symptoms, which may need monitoring and assessment
- bowel obstruction due to malignancy (women need to be alerted to possible symptoms and advised to seek immediate medical assessment)
- decline in mobility and/or functional status as a result of treatment (a referral to physiotherapy and occupational therapy may be needed)
- emotional distress arising from fear of disease recurrence, changes in body image, returning to work, anxiety/depression, relationship or interpersonal problems and sexuality concerns
- potential isolation from normal support networks, particularly for rural women who are staying away from home for treatment
- abdominal ascites (abdominal symptoms need monitoring and assessment)
- cognitive changes as a result of treatment (such as altered memory, attention and concentration)
- financial and employment issues (such as loss of income and assistance with returning to work, and cost of treatment, travel and accommodation)
- legal issues including advance care planning, appointing a power of attorney or enduring guardian, completing a will and making an insurance, superannuation or social security claim on the basis of terminal illness or permanent disability
- the need for appropriate information for women from culturally and linguistically diverse backgrounds.
Rehabilitation may be required at any point of the care pathway from preparing for treatment through to disease-free survival and palliative care.
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.
Early referral to palliative care can improve the quality of life for people with cancer and, in some cases, may be associated with survival benefits (Haines 2011; Temel et al. 2010; Zimmermann et al. 2014).
The lead clinician should ensure timely and appropriate referral to palliative care services. Referral to palliative care services should be based on need, not prognosis.
Patients should be encouraged to develop an advance care plan (AHMAC 2011).
Ensure the needs and preferences of the person’s family and carers are assessed and directly inform support and guidance about their role (Palliative Care Australia 2018).
Further information
Refer patients and carers to Palliative Care Australia.
The lead clinician should:
- discuss the management of any of the issues identified in section 5.5.1)
- explain the treatment summary and follow-up care plan
- provide information about the signs and symptoms of recurrent disease
- provide information about secondary prevention and healthy living
- provide clear information about the role and benefits of palliative care.
The lead clinician should ensure regular, timely, two-way communication with the woman’s general practitioner regarding:
- the follow-up care plan
- potential late effects
- supportive and palliative care requirements
- the woman’s progress
- recommendations from the multidisciplinary team
- any shared care arrangements
- a process for rapid re-entry to medical services for women with suspected recurrence.