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Our latest piece of research with Pelvic Radiation Disease Association, “I want my life back”, examines the long-term side effects of radiotherapy and the current gaps in professional understanding and support. We started this report well before COVID-19 and are releasing it now as patients affected by PRD cannot wait any longer.
Radiotherapy is a common and highly effective treatment for cervical cancer, and more people are surviving cervical cancer than ever before.
While short-term side effects are common – as with all medical procedures - the therapy can sometimes cause Pelvic Radiation Disease (PRD). PRD is a collection of symptoms affecting the pelvic organs – such as bladder and bowels – following toxicity exposure during treatment.
Symptoms of PRD can include incontinence, pain, infertility, lymphoedema, and nerve damage, and can be chronic and debilitating for those affected. They can also occur months or even years after radiotherapy has been completed, meaning it is not always obvious to the person experience them what the cause it.
These symptoms are often manageable and treatable, and specialists late-effects clinics have been praised by patients for their support with the condition. However, our research has found that too few people living with PRD are getting the care they need.
Sometimes patients are unaware that radiotherapy can have long-term effects, making the onset of these symptoms particularly alarming. Crucially, if these symptoms do present, medical professionals are not always aware of the existence of PRD – which can result in patients being bounced around the NHS in pursuit of an explanation.
Late-effects clinics can make a real difference to patients’ physical and mental health, as well as recognition and support from specialist clinicians who understand PRD. Though while some specialist clinics for PRD exist, our report highlights that they are few and far between. Lack of funding, resources and low awareness of PRD are all contributing to gaps in care which are leaving patients struggling alone with debilitating symptoms.
We have a number of recommendations, to ensure that everyone is supported following pelvic radiotherapy.
If you have been affected by Pelvic Radiation Disease, or have any questions or concerns around cervical cancer and its treatment, please get in touch with us or the Pelvic Radiation Disease Association.
You can call us on our free Helpline on 0808 802 8000.
Talk about your personal experience and share our report on social media to help raise awareness of Pelvic Radiation Disease and the recommendations we are making.
Sharing the report is simple! Use our suggested post:
Radiotherapy is an effective treatment for cervical cancer, but can sometimes result in long-term side-effects including Pelvic Radiation Disease. @JoTrust are calling for greater research and support for the condition, to ensure that nobody is left with unmanageable side-effects: jostrust.org.uk/prd-report