Each May, Bladder Cancer Awareness Month is a time to increase awareness of the disease, to raise funds for bladder cancer research, as well as to focus on patient education, support, treatment and care. In order to commemorate this important awareness event on The Waiting Room, we spoke with Dr Lydia Makaroff, CEO of Fight Bladder Cancer UK.
As an introduction, please tell us a bit about Fight Bladder Cancer, i.e., its inception, current situation, and goals, as well as your own role within the charity.
Fight Bladder Cancer is a dynamic, patient-led charity. We work to ensure that everyone affected by bladder cancer – patients, carers, family and friends – has a place to come to for support, information and advice. We ensure that someone is speaking up for them when key decisions are made about policy, care, and research.
We continue to work hard delivering the legacy of Andrew Winterbottom, a determined bladder cancer patient who saw the lack of patient leadership for bladder cancer in the UK and worked with his wife to form this charity from their garden shed in 2009.
As the CEO, I am responsible for managing the day-to-day operations of the charity, guided by our board of trustees. The majority of our trustees are patients and carers, who ensure that Fight Bladder Cancer continues to be driven by insights from people directly affected by bladder cancer.
What can be done about bladder cancer, also by the patients themselves?
Finding bladder cancer early makes it much more treatable. The main symptoms of bladder cancer are blood in pee, needing to pee frequently, pain or burning when peeing, and repeated urinary tract infections. If you have one of these symptoms, it’s probably nothing serious, but you should still speak to your GP or family doctor.
Many of the symptoms of bladder cancer are the same as those experienced by people with a urinary tract infection, urinary stones, cystitis, or prostate problems. It is important to use several tests to rule out more straightforward conditions before diagnosing someone with bladder cancer.
What does your organization do regarding bladder cancer?
Fight Bladder Cancer has a vision of a future where everyone survives bladder cancer, and lives long and well. Our mission is to lead the fight against bladder cancer, driven by patient and family insights. We support people affected by bladder cancer, advise on research, raise awareness, and advocate for changes in health policy.
In your opinion, what are the overlooked needs of patients with bladder cancer?
We have found that over half the people with bladder cancer have never heard of the disease before they were diagnosed. People with bladder cancer need to know that they are not alone – there is a whole community of other patients out there.
They need to be able to have frank conversations with their medical team about all the aspects of their life that will be affected by bladder cancer, including peeing, sex, and body image. Patients need to know what treatment options are suitable for their particular situation, sit down with their medical team to discuss their own unique preferences, and jointly make a decision about which treatment is best for them.
Why is a bladder cancer awareness month important and what are you offering for this event?
Bladder Cancer Awareness Month is important because it raises the profile of this neglected cancer. This vital month is a platform through which everyone can hear about the symptoms of bladder cancer – blood in your pee, repeated urinary tract infections, and increased frequency or pain when weeing.
Our signature colour for awareness month is orange! Whether you bake an orange cake, arrange a vase of orange flowers, or dress up in orange and go on a Wee Walk – please share your photos on social media with the hashtag #BladderCancerAware.
Take a moment on the 31st of May to blow beautiful bubbles, capture a picture, and share it on Twitter using the hashtag #BubblesForBladderCancer and tagging us @BladderCancerUK.
For more ideas, take a look at our 31 Days of May Activity Calendar.
On a personal note, what made you want to get involved with and work for Fight Bladder Cancer?
While I was living in Belgium, Andrew Winterbottom and I worked together for many years to raise the profile of bladder cancer in Europe. When he was diagnosed with terminal cancer, he encouraged me to move to the UK and apply for the role of CEO of Fight Bladder Cancer. It has been an honour to continue his legacy, and work to improve the lives of everyone affected by bladder cancer.
Dr Makaroff, many thanks for your time and for the interview!