Bladder cancer affects all ages and is a very common cancer, e.g., it is one of the ten most common cancers in the UK. Bladder cancer has a high mortality rate and shows a very high recurrence rate.

For Bladder Cancer Awareness Month, which is held each May, we spoke with Jeannie Rigby, Chief Executive of the charity Action Bladder Cancer UK (ABC UK).

Please tell us a bit about Action Bladder Cancer UK, i.e., its inception and goals.

ABC UK was set up in 2009 by a group of patients and clinicians as a UK-wide bladder cancer charity. We work to get bladder cancer recognised as a common cancer and the level of acknowledgement, public awareness, new treatments and research investment which it merits – and which those with bladder cancer deserve.

The charity’s board includes both bladder cancer patients and specialist clinicians. Our ABC UK team includes core and project staff and trained volunteers (all bladder cancer patients). We work closely with many bladder cancer specialists within urology, scientific research, cancer nursing and general practice. Our patients provide the insight of direct experience and also actively contribute to cancer advisory panels, research committees, clinical trials, support groups and regional cancer networks.

We deliver our vital work under 4 charitable objectives: to raise awareness of bladder cancer and the related issues; to support patients; to improve outcomes for patients; and to fund and encourage research into bladder cancer.

What can be done about bladder cancer regarding empowering patients and the everyday challenges of living with bladder cancer?

Patients need the right kind of support and information. We take great care to ensure that we provide high-quality information and direct patient support to help patients at the appropriate stage in their treatment journey.

Patients need better support at certain, difficult times. This may be helping patients to make the difficult choices between undergoing Bacillus Calmette-Guerin (BCG) treatment or having their bladder removed or helping patients to deal with the many challenges when adapting to living with a urostomy. For example, we have developed patient support materials working with a group of patients who have undergone a cystectomy (bladder removal), collecting their own experiences and tips on how to live with a urostomy and running online and face-to-face sessions for those who have recently had their bladder removed.

Providing someone to talk to at those difficult points, such as just being diagnosed, making treatment decisions or facing difficulties in adjusting to life after removal of your bladder, can make a big difference. This is why ABC UK works to set up bladder cancer patient support groups, run patient events (both online and face to face), and provide direct patient support – putting people in touch with another patient who has gone through the same experiences.

Also, a very important aspect of empowering those with bladder cancer is by giving patients a voice – bladder cancer is neglected, and there is much work to be done on raising the profile of this common cancer, both with the public but also by lobbying government, medical research bodies and decision makers.

In your opinion, what are the overlooked needs of patients with bladder cancer?

There are few treatment choices for those with bladder cancer and, in the majority of cases, patients are still faced with the same, limited, treatment options as decades ago.

Bladder cancer is overlooked in terms of research investment, and this shows in these limited treatment options, and also in testing and diagnosis.

Many patients are faced with cystectomy (bladder removal) – which is major surgery with a profound impact on your daily life. New bladder saving treatments are badly needed. Whilst there are some exciting developments in new immunotherapies and targeted therapies for treating bladder cancer – most of these are still at the clinical trial stage.

There is a need for a wider network of support – existing patient support services within hospitals and the wider community provide little for someone with bladder cancer. Many patients come to us for this help, having found no information or answers to their questions elsewhere.

Finally, although this is probably the underlying reason for many of the issues I have mentioned: We need a wider acknowledgement of bladder cancer as a common, and overlooked, cancer – one which has poor patient outcomes and relatively little research investment.

Please tell us more about the Patient Decision Aid that you devised. What was the reason for that?

The ABC UK Patient Decision Aid provides information about the most common treatment options available for those patients with high-risk non-muscle-invasive bladder cancer.

As these treatment choices are limited, patients with this type of bladder cancer, faced with the prospect of their tumour perhaps becoming invasive, often have difficult choices to make. The main options are usually treatment directly into the bladder: most commonly immunotherapy with Bacillus Calmette-Guerin (BCG) (or possibly mitomycin C chemotherapy) or cystectomy – surgically removing your bladder, and often other related organs, completely.

This particular decision remains a difficult one and ABC UK are frequently approached by patients or family members, through our direct support service, asking for advice and information at this challenging stage of their treatment.

In response to this need, ABC UK worked with patients and clinicians and produced this unique decision aid in 2019 – updating it this year to reflect varying treatment practice.

It is designed to help patients have a discussion with their clinical team about what’s best for them personally, taking account of overall health as well as their cancer grade and stage. It’s not intended to make those decisions for a patient, but to give the information that will help them think about the effects each option may have on their life, and help them to have these conversations and understand the best way forward for them. It can also help patients talk to partners and family members about a difficult topic. It’s proved to be an extremely valuable resource and is part of our range of ABC UK patient materials in print and online.

Why is raising awareness of bladder cancer so important?

Over 20,300 people are diagnosed with bladder cancer in the UK every year. Globally, over 570,000 are diagnosed every year.

It is not a rare cancer – it’s one of the ten most common cancers in the UK, but it does have the profile and level of awareness of a much rarer condition.

We get told again and again by patients that the first they had heard of bladder cancer was when they were diagnosed. Bladder cancer has a profile of poor outcomes and high recurrence levels – and can often be diagnosed late. It can be hard to diagnose and can sometimes be mistaken for something else (particularly in women, where symptoms can be confused with urinary tract infections (UTIs) or other gynaecological conditions).

People need to be aware of the symptoms – to take action and consult their doctor if they see anything different. There can also be a reluctance to talk about any problems with the urinary system, so we need to get the message across that if you see blood in your urine (even just once), are being treated for persistent UTIs or notice anything unusual, you need to get it checked out.

May is Bladder Cancer Awareness Month – and ABC UK is joining with bladder cancer organisations worldwide to raise awareness of the symptoms. The theme is: “Don’t Go Red – Go to a Doctor.” In other words, don’t be embarrassed to talk about it. It may not be bladder cancer, but don’t take that risk – take action.

Many thanks for your time and for the interview!