There are an estimated 5,700 people living with and beyond bladder cancer in Yorkshire and the Humber. It’s the ninth most common cancer in our region, with 867 people diagnosed with the disease in 2014.
But despite the high numbers of people affected, very little is known about the experience of patients living with bladder cancer.
In 2015, our researchers began a three-year clinical trial to compare two types of treatment for bladder cancer – Bacillus Calmette-Guérin (BCG) therapy and full bladder removal, known as a radical cystectomy.
In preparation for the trial, the team carried out the UK’s first systematic review of the experiences of bladder cancer patients, which has now been published in the Journal of Cancer Survivorship.
What did the review find?
The researchers identified existing first-hand accounts of being diagnosed and treated for bladder cancer. The patient stories were then analysed to determine key themes.
The team found that:
- Patients often struggled to identify symptoms of bladder cancer due to inconsistencies and a lack of pain. Some patients felt that their symptoms were trivialised or misdiagnosed.
- Women who reported blood in their urine were often asked if their symptom was related to their menstrual cycle – an issue which is known to cause delays in referral.
- Patients found making decisions about their treatment very challenging. They had difficulty understanding medical explanations, treatment options and potential side effects. They also felt that they received insufficient information about issues such as survival, sexual function, self-care, finances and insurance, and turned to the internet for help.
- Patients wanted more support post-surgery, including advice about living with a stoma and potential side-effects such as incontinence. Body image was an important concern for many patients following surgery, with worries about the visibility of the stoma.
- Some patients reported a poor quality of life in the first three years following surgery, with disturbed sleep patterns, continued dependence on partners and a decline of social activities.
- The quality of life for patients seemed to improve after five years, although some still reported a lack of sexual activity and other physical complications such as hernias and urinary tract infections.
Gary Chappell’s experience is being monitored as part of the bladder cancer clinical trial.
The review also provided an important insight into the individual experiences of patients going through both surgery and BCG therapy.
What does the review mean for patients?
The review means that we now have a greater understanding of what it’s like to live with bladder cancer.
Through understanding the patient experience, we can improve the quality of life for patients and in turn improve cancer outcomes.
By carrying out a systematic review of current evidence, the team has created a vital resource that can now be used by healthcare providers to ensure their patients are receiving the best possible care and support.
However, it is essential that more studies of this kind are carried out in the future so that we have a more comprehensive picture of being diagnosed with, treated for and surviving bladder cancer.
The clinical trial is being led by Professor Jim Catto, Professor of Urology at the University of Sheffield. It is the first step to see if it is possible to carry out a larger study to compare BCG treatment and bladder removal. The trial is being run by the University of Leeds and is currently recruiting patients from hospitals across Yorkshire.
Patients are eligible for the trial if they have been recently diagnosed with aggressive, but not invasive, bladder cancer. For more information, please contact the BRAVO Team by emailing firstname.lastname@example.org.