“I want my life back”. The long-term side-effects of radiotherapy: Gaps in recognition and resourcing leaving patients suffering without treatment

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.

What is radiotherapy?

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. 

Pelvic Radiation Disease (PRD)

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.

Support for people with PRD

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. 

Our recommendations

We have a number of recommendations, to ensure that everyone is supported following pelvic radiotherapy.

1. All patients to leave radiotherapy with a Treatment Summary, that is also issued to their GP, with details of their treatment, potential side effects, and where to access appropriate referrals and support if they experience them.
2. Centres of excellence for PRD to be established to support diagnosis and referral for patients, in addition to building the specialism through developing training across the workforce, trialling new treatments, contributing to the knowledge base, and providing a central resource hub for clinicians.
3. NICE guidelines on the diagnosis and management of the late effects of pelvic radiotherapy, or on the management of cervical cancer, to be developed, including follow up pathways for identification and treatment of symptoms following radiotherapy.
4. A tariff for the late effects of cancer treatment to be developed within the NHS to fund much needed clinics and services.
5. New research to be conducted to assess current understanding of PRD among professionals across primary and secondary care, in addition to long range studies looking at the experience of patients.
6. Professional bodies and societies including Society and College of Radiographers, Royal College of Physicians, British Society of Gastroenterology, and Royal College of General Practitioners to identify opportunities where teaching about toxicity following radiotherapy can be included in medical training, especially for primary practice and gastroenterology where patients may present with complex symptoms.

Get support

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. 

Contact your MP

Write to your MP to let them know about our new report and what we recommend. You can use this draft letter as guidance >