4 minute read

I want my life back

WORDS BY IMOGEN PINNELL

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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About 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 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

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.

I tried 5 different kinds of medication, none of which helped, and began a nerve stimulation treatment, percutaneous tibial nerve stimuation (PTNS). It didn’t completely solve my issues but was improving things significantly. Then the pandemic put me back to square one with my treatment.

I find leaving the house really difficult and I don’t eat for two hours before I leave because I’m terrified that I’ll need the toilet. I’ve pulled away from friends and family. My relationship with my husband is strained because I’m so tired all the time and the continence issues make it really hard for me to feel attractive.”

What can healthcare professionals do?

1. Raise the topic of PRD. Explain the possibility of PRD before and after radiotherapy, and discuss signs to look out for. Ensure your patient knows to tell you or someone else in their medical team if they notice any symptoms.

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Check your patient has a Treatment Summary. It should have been completed and passed to you by their secondary care team. If your patient doesn’t have one, you or they can enquire with the hospital.

Ask questions. Patients may feel uncomfortable talking about personal symptoms or believe it’s something they should ‘put up with’. If a patient has had radiotherapy at any point in the past, check in with them and ask how they are doing. They may not make the connection between treatment and the symptoms, so it can help to be prompted.

Introduce tools and checklists to aid identification of symptoms. Utilise ALERT-B and The Practical Management of the Gastrointestinal Symptoms of Pelvic Radiation Disease, but be aware of other PRD symptoms falling outside of the gastrointestinal umbrella.

Offer ways to manage PRD symptoms and address underlying causes. While PRD can be complex, there are some steps that can help: • Medication or surgery can help manage bowel and bladder problems. • Medication can help with bone problems and pain, while physiotherapy can support with mobility issues. • Creams can ease vaginal symptoms and help improve sexual wellbeing. • Talking therapy may help someone experiencing psychological issues.

Identify services, pathways and clinicians available to you and your patients. Dedicated late-effects clinics, integrated services supporting patients post-radiotherapy, and clinicians with specialist knowledge of PRD symptoms can significantly improve quality of life.

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Signpost to further information and support. You can refer patients to our information about PRD and other organisations that offer support, including the Pelvic Radiation Disease Association.

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Identify opportunities for training among your workforce. Share resources or our report I Want My Life Back.

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