Real bladder cancer patient stories illustrate their journey

Bladder Cancer is the 9^th most commonly diagnosed cancer in the world with 610,000 people diagnosed each year. Around the world, the 1.9 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 raise awareness about the disease by highlighting the symptoms of bladder cancer and overcoming any barriers to seeking medical advice during Bladder Cancer Awareness Month. Early diagnosis and seeking medical advice and care without delay can increase the 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 the story of Melissa. Patient 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.

Melissa (Female) lives in the United States and was diagnosed in 2021 at the age of 52.

Tell us about the symptoms you have experienced and how you dealt with them?

Initially, I experienced extreme fatigue and symptoms typical of a urinary tract infection, which I attributed to peri-menopause, especially when I noticed blood in my urine. However, the situation escalated around Christmas 2020 when I started urinating bright red blood, and I couldn’t muster the energy to even decorate our tree or home. Although I googled my symptoms and came across bladder cancer as a possibility, I dismissed it, thinking I was too young. The confusion deepened when a clinic, treating me for what was thought to be a UTI, informed me I didn’t actually have one despite my symptoms and bloody urine.

Tell us about how you received your bladder cancer diagnosis? 

After turning 52 in January 2021, my symptoms worsened dramatically. Concerned, my fiancé urged me to go to the ER after I screamed in pain trying to get out of bed. We initially suspected kidney stones. Alone in the ER due to COVID-19 precautions, the interactions with the medical staff were brief but became noticeably more compassionate after my CT scan, signaling to me that something serious was wrong. Alone and frightened, a doctor, with tears in his eyes, informed me I had bladder cancer, leaving me in a state of shock, worried about breaking the news to my fiancé and our sixteen-year-old daughter, Kara.

Tell us about your feelings and emotions at the time you received your bladder cancer diagnosis? 

The diagnosis left me terrified and uncertain about the severity of the cancer or if it had spread. Motivated by the memory of my daughter losing her father at a young age, I was determined to fight the disease. The emotional toll was heavy, as every conversation about my condition with friends and family ended in tears.

Who was the first person you told about your bladder cancer diagnosis? 

The first person I told was my fiancé, Richie. We shared a deeply emotional moment, crying together. We spent the next few days at home, grappling with the news, while my daughter stayed at a friend’s house.

What life changes have you made since diagnosis?

As a lifetime smoker, I’ve made significant strides in quitting smoking. Although I haven’t quit completely, I’ve reduced my intake to no more than three cigarettes a day, with many smoke-free days. I am committed to quitting entirely.

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

A few weeks after my diagnosis, I underwent a TURBT procedure, intended to remove the cancer through outpatient surgery. However, due to extensive bleeding and the presence of significant cancer tissue, the surgery lasted four hours, resulting in a four-day hospital stay. Complications continued at home, leading to an emergency surgery and an eight-day ICU stay. In light of the cancer penetrating the bladder wall, removal of my bladder was deemed necessary. This period was intensely isolating due to COVID-19 restrictions.

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

For women facing a radical cystectomy, it’s crucial to find a surgeon who is not only skilled but also empathetic and responsive. Discuss pain management and post-operative care extensively, including arrangements for home health and treatment for menopause-related symptoms, as the surgery involves significant alterations, including a hysterectomy. Understand that recovery is a lengthy and challenging process, and adjusting to life with a stoma and bag takes time and emotional resilience.

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

I found a valuable support group for women with urostomies a few months post-surgery. This private group on Facebook has been incredibly supportive and helpful, offering a space for shared experiences and advice, which I highly recommend to others in similar situations.

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