Pelvic Radiation Disease – what the doctor didn’t tell you.


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Tim Ward1,Andrew Brunskill2
1Pelvic Radiation Disease Association/ NCR Consumer CTRad WS2,2Pelvic Radiation Disease Association

Abstract

Background

Following pelvic radiotherapy, people may develop Pelvic Radiation Disease (PRD), a devastating syndrome of chronic pelvic and other symptoms. The Pelvic Radiation Disease Association(PRDA) estimate that up to 100,000 individuals in the UK are experiencing ongoing side effects of pelvic radiotherapy and are suffering in silence from some of the most upsetting, embarrassing and debilitating symptoms an individual can experience.

Relatively few clinics exist and people with multiple symptoms are often not managed holistically. A questionnaire was designed by the PRDA to find out more about the problems experienced by its supporters.

Method

Questionnaires  designed with input from PRDA clinical advisors were distributed to supporters between 2013 and 2018. Respondents totalled 170 and data were compiled and analysed using  STATA  software.

Results

Respondents reported a wide range of symptoms from appetite disturbance (12%) to sexual difficulties (45%). There was a clear disparity between the symptoms respondents reported that they had been told may happen after pelvic radiotherapy and what actually happened: 13% were told about pelvic/abdominal pain, but 34% experience it; bone pain 5%/15%; bloating 0%/27%; urinary symptoms – 24%/42%; sexual problems – 33%/45%. Cervical/uterine cancer patients experience more pain than other cancers reported with higher levels of dissatisfaction as to the information given at the time of treatment.

Conclusion

This survey has confirmed the major symptoms experienced by patients undergoing pelvic radiotherapy as Pain, urinary issues, bowl problems, nausea and bloat.

Pain, Nausea and appetite feature as statistically significant in the analysis whilst bloating featured strongly in reported symptoms post treatment. There is a clear discord between the  information given to patients prior to starting treatment and the reality they experience post treatment. Current information given to patients  should be updated and extended to include these problems. Holistic needs assessment should take into account this extended repertoire of symptoms and solutions applied.