Pelvic Radiation Disease – Definition and Terminology

The vision of the Pelvic Radiation Disease Association (PRDA) is that Pelvic Radiation Disease (PRD) is widely accepted as a serious consequence or ‘late effect’ of cancer treatment that requires focused research and education.

To achieve this, Pelvic Radiation Disease as a medical term must become completely accepted. We are currently a long way from this. PRD is not in medical dictionaries, coding dictionaries or library search terms, and is not properly in Wikipedia (yet!). Without regular, standardised use of the term and medical coding, the health services will never be able to count the number of people experiencing PRD and therefore not be able to adequately provide services.

To highlight the problem, PRDA surveyed gastroenterology professionals at a conference – and found that very few people used the term PRD. (More information about this survey can be found here).

On behalf of people with PRD, PRDA is therefore working to ensure health professionals in every discipline and specialty understand that PRD is a chronic, multi-symptom, multi-organ condition that often affects a person’s psychological wellbeing. Using diagnostic terms that imply a short-lived symptom in a single organ, such as ‘radiation proctitis’, is not correct.

The term PRD allows acceptance of the multiple problems that people with PRD face and helps professionals to see PRD as a complex condition that requires multi-disciplinary input and a holistic approach to care and treatment. Hence if a gastroenterology professional diagnoses PRD affecting the bowel, calling it ‘PRD’ will prompt them to ask about bladder, sexual/fertility, bone, psychological problems and other holistic needs.

The term PRD also helps in the provision of information prior to pelvic radiotherapy, as it ensures that people are told about all possible side effects of their treatment so that they know to seek help should difficulties arise. PRDA welcomes the introduction of standard radiotherapy consent forms by the Royal College of Radiologists as a step towards greater information provision about late effects of radiotherapy.

It helps people with PRD enormously to know that their health professionals see them as a whole person. The term PRD therefore also helps them to understand their condition better and empowers them to seek help for all their problems.

 

PRDA has produced a definition of Pelvic Radiation Disease:

 

Download the full definition

Download the short definition

 

Pelvic Radiation Disease (PRD) is defined as one or more ongoing symptoms of variable complexity that may affect people who have previously had radiotherapy to the pelvic region to treat their cancer. This includes pelvic radiotherapy for cancers of the colon, rectum, anus, prostate, testes, bladder, cervix and womb, but also total body radiotherapy and radiotherapy in the pelvic area for other primary and secondary cancers.

Pelvic Radiation Disease can affect one or more of:

Bladder Bone
Bowel Nerves
Sexual Organs Blood supply
Stomach and digestion Lymphatic system
Skin Mental health

Symptoms arise as a result of damage to internal organs or skin. Symptoms often settle in the few weeks after radiotherapy finishes but Pelvic Radiation Disease can be defined as symptoms starting or continuing 3 months or more after the end of radiotherapy. Sometimes they start many years or decades after radiotherapy.

 

The following Pelvic Radiation Disease symptoms range from mild to severe, and some are more common than others, but all tend to be under-recognised:

 

  • bowel and stomach difficulties* (almost any bowel or stomach symptom can be caused by radiotherapy but the most common symptoms are accidents, leakage or an inability to control the bowel or hang on, diarrhoea, need to rush to the toilet, bleeding from the bowel, poor appetite and malnutrition)
  • bladder difficulties (such as leakage or lack of control, need to rush to pass urine, bleeding)
  • sexual difficulties (such as painful intercourse for women or achieving and maintaining a satisfactory erection and/ or problems with ejaculation for men)
  • pain
  • fatigue
  • swelling (e.g. lymphoedema)
  • poor mobility
  • blood circulation disorders
  • anaemia
  • sore skin
  • nerve damage
  • bone fractures
  • hormonal changes (such as hot flushes)
  • infertility
  • sleep disturbance
  • memory problems
  • psychological difficulties.

*A full list of gastrointestinal symptoms can be found in ‘The Practical Management of the Gastrointestinal Symptoms of Pelvic Radiation Disease‘.

 

All or any of these symptoms can have profound effect on a person’s ability to live a normal life. However, with correct diagnosis, treatment and care by health professionals with expertise in PRD, and with support to self-manage problems, significant improvement to quality of life can be made.

 

Other words that are sometimes used to describe symptoms of PRD include:
Radiation enteritis, Radiation proctitis, Radiation colitis, Radiation enteropathy, Radiation cystitis, Radiation cystopathy, Radiation-induced lumbar plexopathy and Pelvic insufficiency fractures.

 

PRDA believes that the overarching term ‘Pelvic Radiation Disease’ should be used, as it covers the fact that often several organs, as well as mental health, are affected. The term Pelvic Radiation Disease therefore encourages a multi-professional approach to patient care to be taken.

 

The Pelvic Radiation Disease Association aims to support all people affected by, or at risk of, side effects due to pelvic radiotherapy, at any stage of cancer treatment, and however long ago cancer treatment was given.

 

References
Adams, E, Boulton MG, Horne A, Rose PW, Dirrant L, Collingwood M, Oskrochi R, Davidson SE and Watson EK. (2014) The Effects of Pelvic Radiotherapy on Cancer Survivors: Symptom Profile, Psychological Morbidity and Quality of Life. Clinical Oncology, 26(1), pp 10-17. https://www.clinicaloncologyonline.net/article/S0936-6555(13)00309-9/fulltext (abstract free to view; payment required for full access).
Andreyev HJN, Wotherspoon A, Denham JW & Hauer-Jensen M. (2011) “Pelvic radiation disease”: New understanding and new solutions for a new disease in the era of cancer survivorship. Scandinavian Journal of Gastroenterology. 46(4) pp 389-397. http://www.tandfonline.com/doi/full/10.3109/00365521.2010.545832 (abstract free to view; payment required for full access).
Andreyev HJN, Muls AC, Norton C, Ralph C, Watson L, Shaw C and Lindsay JO. (2015) Guidance: The practical management of the gastrointestinal symptoms of pelvic radiation disease. Frontline Gastroenterology 6:53–72. Also available as a booklet from Macmillan https://www.macmillan.org.uk/_images/practical-management-gi-symptoms-pelvic-radiation-disease_tcm9-300557.pdf (last accessed 11 December 2021)
Jo’s Cervical Cancer Trust. Long term consequences of cervical cancer and its treatment. https://www.jostrust.org.uk/information/moving-forward-from-a-cancer-diagnosis/PRD (last accessed 27 December 2019)
Lobo N, Kulkarni M, Hughes S, Nair R, Khan MS and Thurairaja R. (2018) Urologic Complications Following Pelvic Radiotherapy. Urology. 122, pp1-9. https://www.goldjournal.net/article/S0090-4295(18)30750-7/fulltext (abstract free to view; payment required for full access).
Macmillan Cancer Support webpage of pelvic radiotherapy late effects. https://www.macmillan.org.uk/information-and-support/coping/side-effects-and-symptoms/late-effects-pelvic-radiotherapy  (last accessed 11 December 2021).
Morris KA & Haboubi NY. (2015) Pelvic radiation therapy: Between delight and disaster. World Journal of Gastrointestinal Surgery. 7(11) pp 279-288. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4663381/pdf/WJGS-7- 279.pdf
Wedlake LJ, Thomas K, Lalji A, Blake P, Khoo VS, Tait D and Andreyev HJN. (2010) Predicting late effects of pelvic radiotherapy: Is there a better approach? International Journal of Radiation Oncology Biology Physics. 78(4), pp. 1163- 1170.

 

Pelvic Radiation Disease Association, February 2020

Acknowledgements: Sincere thanks to members of the Pelvic Radiation Disease Association’s Medical Advisory Panel for their advice and input to this definition.

 

Modified: 7th January 2022

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