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.

This year the World Bladder Cancer Patient Coalition (WBCPC) wants to spark conversations that drive awareness around bladder cancer by honing in on bladder cancer symptoms, such as blood in the urine, and the challenges they bring during Bladder Cancer Awareness Month. Early diagnosis and seeking medical advice and care without delay can increase long-term survival. If caught in its early stages – the 5-year survival rate for bladder cancer can be up to 90%.

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

Kaitlyn (Female) lives in Canada and was diagnosed in 2019 at the age of 27.

Suffered for months before diagnosis, doctors kept treating me for bladder infections and did not take my symptoms seriously until I started to demand more tests. I knew something was going on inside my body that needed much more attention than another round of antibiotics. I was a new mom, it was hell. Finally got a diagnosis, and had my first turbt. It came back less than 2 years later. Had my second turbt. Currently in Bacillus Calmette-Guerin (BCG)treatment.

I experienced constant bladder cancer infections. Debilitating discomfort to the point I was missing time from work, and family gatherings, it was affecting my ability to be present for my child. Way too many rounds of antibiotics. Blood in the urine. By the time I had my surgery (which ended up being an emergency procedure) my urine had so much blood in it that you couldn’t see through the cup. It took way too long for a diagnosis because it’s not ‘statistically common’ for a 27-year-old female to develop bladder tumors. I was overlooked and dismissed for an unsettling amount of time. Until I started to not take no for an answer and demanded to be taken seriously.

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

To get the treatment you may need and reevaluate your lifestyle and diet. Consider what you put in and around your body.

Tonny (male) lives in Australia and was diagnosed in 2011 at the age of 56.

One minute I was firing on all cylinders. I had only joked with a Dad a few weeks earlier about being indestructible!  Then in a very short space of time, my world was falling apart as my health became the only thing on my mind.  Bladder cancer and prostate cancer will do that to you!

In October 2011, just after my 56th birthday, I was diagnosed. Two stints in the hospital to remove the cancer, my bladder, my prostate and my seminal vesicles left me with a few challenges, to say the least. The two and a half years following my discharge from the hospital have been a roller coaster; the challenges of incontinence, bowel problems and major changes to sexuality have been tough.  Don’t get me wrong … I am not complaining.  I had wonderful doctors and nurses who cared for me.  Friends and family were amazing with their support and help.  Today, I am cancer-free.

You must take notice of your urine! My urine looked “different” for a few months before I peed bright red blood. If you have any worries about your urine, your GP can tell you on the spot, with a urine sample, if you might have a problem.

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

Everyone’s journey is different. I lost my bladder. Many other patients manage to beat the cancer without this surgery.  The only “blanket” advice I can offer is that you – the patient – must drive your own healthcare. If things aren’t going great – you’ve got to get on the front foot with your medical team. Your specialists, your GP, your nurses, and your physios are there to help, so ask.

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