Key learning points:
– Consequences of treatment
– Survivorship initiative; the role of the primary care nurse
– Follow up programmes
Many women will tell the story that the end of their womb cancer treatment is not the relief and end of the emotional struggle they had anticipated. It does not herald life beginning again. It is the beginning of another sometimes more frightening survivorship journey where patients experience side effects from their treatment and are unsure who to go to for support and advice. The emotional fall out and fear of the cancer returning is not to be underestimated.
This article will give an overview of potential consequences of womb cancer treatment, describe initiatives where the primary care nurse can be a key worker in offering support and advice before, during, and after treatment.
Consequences of treatment
A woman diagnosed with womb cancer may be treated with one or all three modalities: surgery, radiotherapy and chemotherapy. Her physical side effect profile (also known as consequences of treatment) will reflect her treatment modality. Early womb cancers are treated with surgery, with many going to receive adjuvant (second, add on treatment to improve success of treatment) radiotherapy. This may include chemotherapy, hormone therapy, radical pelvic radiotherapy or vaginal radiotherapy. These physical side effects may add further burdens to her coping mechanisms and exacerbate psychosocial and sexual problems.
Many women describe fatigue as a major debilitating side effect of treatment; being surprised at how exhausted they feel post operatively. Depending on co-morbidities most women will need (at least) six weeks off work to recover. Body image can be affected dramatically and this varies from woman to woman; for the pre-menopausal woman the loss of her fertility through hysterectomy combined with surgical menopause may present an enormous challenge to her feminity and sexual self.
Discharge from hospital may be within days of surgery. Fatigue, constipation, bladder tenderness, sleep disruption and wound pain are normal and common and represent the immediate post-operative physical symptoms. These settle within a week and the fatigue and wound discomfort should have resolved by six weeks. Some centres still practice routine lymph-node surgery. This can be associated with leg swelling, pain and a fear of thrombosis. The leg swelling is likely to settle within a month but any residual swelling thereafter is likely to be permanent.
Many women will experience side effects during radiotherapy treatment, with half of women reporting gastrointestinal late effects (determined as six months after treatment has finished) (1), many symptoms (eg. diarrhoea, frequency, bloating) can be self-managed by symptom control with advice from an oncology team or GP. Some women will have severe debilitating effects and need referral to specialist help. New guidelines (2) offer easy to follow algorithms of care for primary and secondary nurses and multidisciplinary clinicians.
Fewer women experience urinary adverse effects, the main ones being reduced bladder capacity and increased urgency. Studies examining the long-term problems have found that this has a profound impact on quality of life and the smaller capacity bladder disturbs sleep and contributes to chronic fatigue.
Sexual morbidity is common in women following treatment for many types of cancer (due to many complex factors including loss of fertility, fatigue, lack of libido, early menopause). A specific side effect of pelvic radiotherapy is vaginal stenosis, symptoms described as shortening, narrowing, loss of elasticity and lubrication of the vagina. For some women using vaginal dilators may help to improve their vaginal integrity for ease of penetrative sex and follow up examinations. Vaginal dilators are usually issued to women during their radiotherapy treatment, alongside principles and guidance on their use given by the therapy radiographer or gynaecology oncology specialist nurse team according to best practice principles. (3) Further guidance on managing psychosexual morbidity is due for publication autumn 2015. (4)
Pelvic radiation disease (PRD) is a term used to describe the chronic symptoms that may be experienced following pelvic radiotherapy. A concise guidance document (covering bowel, bladder toxicities, menopause, sexual difficulties, lymphoedma) focusing on supporting women following treatment with radiotherapy was produced by experts in the area in collaboration with the cancer charity Macmillan, proving information on signs and symptoms and signposting to pathways of care that should be available. (5) It is a helpful document for primary care nurses because it allows them to understand and establish the pathways available to womb cancer survivors, so they can give the best advice and guidance possible.
The side effects of chemotherapy depend on the agents used and the duration of treatment. Common drugs include platinum and a taxane (e.g taxol). Hair loss, numb fingers and feet follow taxol use, and it can be months before the hair grows back and sensation returns to the fingers and feet. Alopecia affects social interaction, body image and wellbeing. Loss of sensation affects balance and can precipitate falls or finger burns.
Fatigue is a dominant feature for women undergoing chemotherapy, this in combination with cognitive impairment that can occur in menopause can compound a feeling of woolliness or vagueness often called chemo brain. The reduction in cognitive ability for some women can have a profound effect on work, social interactions and quality of life.
Survivorship Initiative: the role of the primary care nurse
The national cancer survivorship initiative (NSCI) (6) was set up to improve the quality of care and for people living with and beyond cancer. The NCSI identified the recovery package, (7) a series of key interventions that in combination with each other can improve outcomes for people living with and beyond cancer. This is relevant for all primary care nurses to ensure they can be as supportive as possible.
The recovery package consists of:
– A holistic needs assessment, supported by a written care plan.
– A treatment summary to explain to the patient and the primary care team treatment given so far, and future management
plan to include managing consequences of treatment and follow up plans.
– A cancer care review by the GP, within six months of diagnosis supported by communication from secondary care.
– A health and wellbeing event offering education on a healthy lifestyle.
The cancer nurse partnership (CNP) is a collaborative of key nursing organisations and communities of practice working towards implementing delivery of the recovery package. The primary care nurse is pivotal in points three and four of the recovery package, with representation from practice nurse leads. For more information see: http://www.ukons.org/cnp
Surveillance following womb cancer varies according to grade
and type of cancer and from hospital to hospital. However, the traditional model of follow up care for cancer patients in secondary care is changing with a drive to move all non acute care into the primary sector. Women are discharged back to GP care where possible.
Within secondary care, there is a move to more nurse-led follow up services. The way forward, therefore, is liaison between practice nurses and gynaecology cancer nurse specialists in secondary care.
Women would benefit enormously from practice nurses shadowing local clinical nurse specialists to learn about local practice and pathways and from the development by both secondary care and primary care nurses of a mutually beneficial, end-of-treatment summary dialogue.
Click here to read a patient’s point of view
1. Henson CC, Andreyev HJ, Symonds RP, Peel D, Swindell R, Davidson SE. Late-onset bowel dysfunction after pelvic radiotherapy: a national survey of current practice and opinions of clinical oncologists. Journal of Clinical Oncology 2011;23(8):552-557.
2. Andreyev HJN, Muls A, Norton C, Ralph C, Watson L, Shaw C and O Lindsay J. Guideline: The Practical Management of the Gastrointestinal Symptoms of Pelvic Radiation Disease. Frontline Gastroenterology 2014.
3. International Clinical Guideline Group. 2012. International Guidelines on Vaginal Dilation after Pelvic Radiotherapy. Owen Mumford:Oxford.www.ncsi.org.uk/wp-content/uploads/Inter-Best-Practice-Guide-vaginal-Dilators-July-2012.
4. The national forum of gynaecological oncology nurses. 2014. http:www.nfgon.org.uk (accessed 20 April 2015).
5. Guidance on long term consequence of treatment for gynaecological cancer. 2014. http://www.macmillan.org.uk/Documents/AboutUs/Health_professionals/MAC14... National Cancer Survivorship Initiative details available at : http://www.ncsi.org.uk (accessed 20 April 2015).
6. Living With And Beyond Cancer : Taking Action To Improve Outcomes. 2013 http://www.gov.uk/government/publications/living-with-and-beyond-cancer-... (accessed 20 April 2015.)
7. National cancer survivorship initiative. 2015. www.ncsi.org.uk (accessed 20 April 2015).
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