• Julia Talor
  • Alison Birtle
  • James Catto
Consultant Nurse Urology , President British Association of Urological Nurses

Why is such a common cancer ignored?

Bladder cancer is a forgotten or little-known-about cancer, even with intermittent campaigns like ‘blood in your pee’, launched to raise public awareness. Add to that the persistent confusion that can occur at the primary care level of bladder cancer symptoms, – such as those of urinary tract infections – diagnosis is an especially urgent issue for women, among whom survival outcomes are significantly worse.

Disappointingly, the National Cancer Patient Experience Survey (NCPES) – designed to monitor national progress on cancer care – currently does not even capture detailed specific experiences of bladder cancer patients.

What can be done to support bladder cancer patients?

The NCPES in England and national cancer nursing census demonstrates that patients with cancer, who have access to a clinical nurse specialist (CNS), report better experiences and better understanding of the disease. However, access to bladder specific CNSs is less commonplace for patients with very rare cancers.

There is an urgent need to undertake a workforce study and develop greater numbers of CNSs trained to specialise in bladder cancer. There is also urgent need to separately report on the specific perspectives of bladder cancer patients in order to measure their experiences.

How can we build a future without bladder cancer?

Significant investment is needed to develop new, prolonged and sustained public awareness campaigns to, firstly, enable earlier diagnosis and secondly, to facilitate bladder cancer research to increase effective treatment options, reducing variation and improve consistent practice.

Finally, increased availability of CNSs (as part of multi-disciplinary teams) should be coupled with development of inter-professional learning for specialist training in bladder cancer. This will ensure signposting to high-quality information, support and education while highlighting patients’ non-medical needs to ensure that ‘no decision about me without me’ becomes a reality.

Consultant Clinical Oncologist and Honorary Senior Lecturer, Co Chair NIHR Bladder

Why is such a common cancer ignored?

Bladder cancer is the fourth most common cancer in men in the UK, but because symptoms can be similar to a urinary infection (i.e. blood in urine or needing to go to the toilet often) symptoms can get overlooked, especially because patients can be embarrassed.

If we could diagnose earlier, patients would stand a much better chance. Blood in the urine should be reported to a GP.

Bladder cancer survival has not improved over 20 years due to delay in diagnosis, lack of public awareness of bladder cancer and comparatively little publicity or research funding than some other cancers.

 

What can be done to support bladder cancer patients?

We need much better access to information. The online support group, Fight Bladder Cancer Support, is a fantastic resource for patients and their carer/relative/family. However, we need all UK urology clinics to highlight its existence.

Support groups, called ‘Fight Clubs’ exist in several hospitals, but what is really needed is more bladder cancer specific urology nurses. Currently, many urology nurses are also stretched across prostate, kidney and testicular cancer care.

How can we build a future without bladder cancer?

Bladder cancer research is under-resourced, with less than one per cent of research funding in the UK going towards bladder cancer trials.

Patient participation in well-designed trials of chemotherapy, surgery, radiotherapy and immunotherapy can provide much needed insight to the development and causes of bladder cancer. Only though research to find improvements in survival and reductions in side effects of treatment can we move forward.

Smoking is associated with bladder cancer even more than with lung cancer, so reducing the number of people who smoke will reduce the incidence.

Professor of Urological Surgery, University of Sheffield & Editor in Chief, European Urology

Why is such a common cancer ignored?

Several reasons. Firstly, there is a lack of public figures as advocates. A celebrity ambassador is very important in raising awareness of the disease and the need for research funding. Secondly, typical patients are men in their 70s who having worked in heavy industry or driving. These patients are fantastic to care for but often do not engage in social media or in lobbying. Finally, some treatments involve bladder removal and creating a urinary stoma. This can be socially embarrassing and so many patients prefer to keep quiet about their disease.

What can be done to support bladder cancer patients?

The two main charities, 'Fight Bladder Cancer' and 'Action on Bladder Cancer', are creating support networks and online resources. Better support is key. Many patients with bladder cancer can be cured and enjoy an excellent quality of life; diagnosis should not be feared. Secondly, better awareness of symptoms (commonly, blood in the urine or urine infections that keep coming back and don't settle with antibiotics) is imperative.

I see many patients who have delayed seeing their GP as they were scared of the symptoms or did not understand their importance.

How can we build a future without bladder cancer? 

I think that we need more funding into bladder cancer care to develop better tests and treatments for the disease. Recent advances are offering new hope, but the last major breakthrough was many years ago. The main funding bodies (such as Cancer Research UK) spend relatively little on bladder cancer when compared to rarer cancers. This would change if public opinion highlighted the importance of the cancer.

Finally, I think there be could be better working between patients and clinicians, and between clinicians themselves.