Real bladder cancer patient stories illustrate their journey

Bladder Cancer is the 10^th most commonly diagnosed cancer in the world with 570,000 people diagnosed each year. Around the world, the 1.7 million people living with the condition have their own journeys and personal bladder cancer stories to share.

Below we are honoured to bring to you two real patient stories where they share their different personal journeys. These stories are a powerful reminder of the impact of bladder cancer. Bladder cancer patient stories also help raise awareness of bladder cancer and highlight the urgent need for new treatments and research, improved care and support for those living with bladder cancer.

Bladder cancer stories

India (Female) lives in the United Kingdom and was diagnosed in 2021 at the age of 25.

Had a suspected UI and after a few GP visits (and antibiotics) the problems continued to develop and I was then asked to do tests for STIs, even though I was still showing signs of an infection in the bladder. The pain got worse and I started to develop abdominal and back pain so went to A&E where they suspected I had a kidney stone in my bladder that needed moving. After an ultrasound and a couple of CT scans I was told there was a lump in my bladder and I was being emitted for an operation to remove it. About 10 days after my operation I was given the diagnosis of state 2 non-invasive bladder cancer.

Which symptoms have you experienced and how have you dealt with them?

Physically I struggled to fully hold urine after my operation but am much better now, it took me a few months after the hospital to not pass blood if I held urine in (due to work meetings etc), it took a while for me to be able to sit down for long periods without pain or discomfort when urinating. Mentally, I have really struggled. I’ve found it incredibly difficult to meet people of a similar age who have gone through it, I have felt very low and struggled with feelings of isolation and loneliness due to what happened and that it happened during covid, so I was on my own throughout, etc.

Tell us about your experience with bladder cancer treatment? How long did it last? Did you experience side effects? 

Within 4 days of going into A&E I had my op to remove the tumour. I was discharged and then back in A&E 2 hours later in agony due to pain. I was under a lot of stress and it upset my asthma and gastric health. No other additional side effects other than what was mentioned above.

What advice would you give to others who may be newly diagnosed with bladder cancer?

Allow yourself time to acknowledge what’s happening to you, explore how it makes you feel, and allow yourself to have bad days. That asking for help doesn’t make you any less ‘strong’. Normalise bodies too, bladders shouldn’t be embarrassing topics, and you shouldn’t feel ashamed or embarrassed about anything that is or has happened to you.

Have you reached out to other bladder cancer patients or been part of a bladder cancer support group? 

Yes, I go to a bladder cancer group in my nearest city every 3 months. They are great and have been helpful in giving me advice and peer support.

Domenic (male) lives in Canada and was diagnosed in 2021 at the age of 58.

It was traumatic at first but when I realized the tumour had to be removed I remained calm and looked forward to surgery and treatment. My wife and daughter helped me cope with bladder cancer.

I never felt any pain or discomfort, then one day I urinated blood and clots. I was in shock, I thought it was something I ate. The bleeding continued throughout the day. The next morning I went to the emergency and they detected a mass in my bladder. Two days later I had a cystoscopy.

What advice would you give to others who may be newly diagnosed with bladder cancer?

As soon as you notice blood in your urine, head to the emergency, the sooner it is diagnosed, the easier it will be to treat.

Read more bladder cancer patient stories from around the world

Are you or your loved one affected by bladder cancer? Your stories can help others facing a bladder cancer diagnosis and help bring awareness to the disease. Please share your journey and fill in this form. 

If you are looking to learn more about bladder cancer on our bladder cancer information pages or contact with our member organisations closest to you.

If you have any questions please get in touch with us at info@worldbladdercancer.org