FERTILE YEARS
WORDS BY IMOGEN PINNELL
I want my life back
GAPS IN UNDERSTANDING AND LACK OF FUNDING AROUND PELVIC RADIATION DISEASE MEAN MANY PATIENTS ARE LIVING WITH LIFE-ALTERING CONDITIONS AND NOT GETTING THE SUPPORT OR TREATMENT THEY DESPERATELY NEED
Research from JO’S CERVICAL CANCER TRUST has found that cervical cancer patients treated with radiotherapy are not receiving appropriate care for the long-term side effects of their treatment.
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bout 49,000 women in the UK are living with and beyond a cervical cancer diagnosis, with over half of those diagnosed living for 10 years or more – but surviving is very different to living well. Around 40% of patients receive radiotherapy during treatment for cervical cancer. It’s an effective treatment, but can lead to long term impacts, including Pelvic Radiation Disease (PRD) – a collection of symptoms affecting pelvic organs following toxicity exposure. Gaps in understanding and lack of funding around PRD mean many patients are living with life-altering conditions and not getting the support or treatment they desperately need. We spoke with 18 patients living with PRD, interviewed health professionals working within late effects and radiotherapy, and issued Freedom of Information requests to NHS Trusts and Health Boards across the UK. Our report, I want my life back, highlights lack of consistent guidance, diagnosis, and treatment for those affected.
What is Pelvic Radiation Disease? During radiotherapy treatment, body parts surrounding the targeted area are sometimes unavoidably affected and damaged. PRD describes symptoms continuing for at least 3 months following radiotherapy and can include incontinence, pain, infertility, lymphoedema, bone fractures, and nerve damage. These can be debilitating, permanent, and leave sufferers unable to continue dayto-day activities. These symptoms are often related to underlying conditions including radiation osteitis, pelvic insufficiency fractures and exocrine pancreatic insufficiency. Poor resourcing to aid PRD management, in addition to limited awareness amongst both primary and secondary care, mean symptoms are often looked at in isolation. With underlying causes unidentified, ineffective treatment can be given and patients report ricocheting around the health system seeking answers. ► More information and support: Action
Radiotherapy www.actionradiotherapy.org, Jo’s Cervical Cancer Trust www.jostrust.org.uk, Pelvic Radiation Disease Association www.prda.org.uk, Macmillan Cancer Care www.macmillan.org.uk
14 | Primary Care Women’s Health Forum | pcwhf.co.uk
Case study: Jess’ Story “I began to experience issues with my bowels and was given loperamide but was offered no alternative treatment. I have had diarrhoea every day since Christmas Eve 2016 but despite this have managed to gain 10 stone. My GP has been of little help, suggesting I get a gastric band or just stop eating. Problems with my bladder began a year after treatment. One day I was fine, the next I wet myself. It began to happen more regularly and then I started to have pains. I was initially given antibiotics for thrush but they eventually referred me to a bladder specialist. I was told I had an over-reactive bladder due to scarring caused by my cancer treatment.
