David’s story: Living with bladder cancer

David’s story: Living with bladder cancer

David was 63 years old when he was diagnosed with high‑grade (Grade 3), non‑muscle invasive bladder cancer in March 2023.

Initial symptoms and investigations

David began experiencing pain when passing urine and noticed blood in his urine. He contacted his GP surgery immediately and was asked to provide a urine sample to check for infection. When no infection was found, he was initially told that no further action was needed. Unsatisfied and still concerned, David followed up with the surgery and later had a telephone consultation with a locum GP.

During that conversation, the GP explained that due to his age and symptoms bladder cancer needed to be ruled out. He was referred for a CT scan and later underwent a cystoscopy, where three tumours were identified.

Receiving the news was a shock. David recalls hearing the word “tumour” and asking directly whether that meant cancer. Although there was some initial uncertainty while further tests were arranged, it was made clear that cancer was suspected.

Diagnosis and the path to treatment

David was referred for surgery and underwent his first TURBT (transurethral resection of bladder tumour) around four weeks later. The procedure itself was successful, but the recovery was difficult. David was discharged with a catheter and failed his initial trial without catheter (TWOC), meaning he had to be re‑catheterised and sent home again.

This period was especially difficult both physically and emotionally. The discomfort of catheterisation and the pain during urination afterwards were intense. Nothing had quite prepared him for that experience.

David learned that although his cancer was high grade, it had not invaded the muscle. A second TURBT was required, meaning he went through the same difficult recovery a second time.

Treatment and difficult decisions

After surgery, David began a course of six bladder instillations using immunotherapy (known as BCG). The instillations involve the immunotherapy treatment being delivered into the bladder via a catheter. David experienced blood in the urine and flu‑like symptoms lasting up to 24 hours after each treatment.

David completed the initial course of six treatments and then had a cystoscopy to see whether the cancer was still present. Being told that cancer was still present after all he had been through was his lowest point. At that stage, bladder removal was raised as a possible next step.

David was given the opportunity to speak with other men who had undergone bladder removal including those living with a stoma and those with a neobladder. These conversations were invaluable and David found it reassuring to speak to people who had been through both options.

Despite this, discussions with the consultant were sobering. The surgery was described as life‑changing, with significant risks. David’s options were bladder removal or to try bladder instillations with immunotherapy again, although he was told that the chance of success would be lower this time round. In consultation with his healthcare team and weighing up his options, David decided to try BCG treatment again.

To his relief, the subsequent cystoscopy was clear. He was cancer-free. He later completed maintenance courses of treatment and ongoing surveillance continued to show no visible cancer.

Living with bladder cancer

The impact of bladder cancer on David’s daily life has been significant. The surgeries and early treatment phases left him unable to work for long periods. Semi‑retired and self‑employed, David found this particularly difficult, as time off meant lost income. For months, he struggled with a frequent urge to urinate and was unable to cycle, teach, or work for more than short periods at a time.

Even routine activities required careful planning, especially immediately after surgery or cystoscopy. Car journeys were challenging and on some occasions his wife had to stop so he could urgently find a toilet. These experiences were difficult but over time David learned to adapt.

Bladder cancer also had an impact on David’s family. His wife and children were extremely worried, particularly during periods of treatment uncertainty and when major surgery was being discussed. David is very aware of the emotional toll on them and feels this is an often-overlooked aspect of cancer care.

David learned to live with uncertainty. The fear of recurrence never fully disappears, but clear cystoscopies have brought relief and hope.

Support and the care team

David felt very supported by his nursing team, particularly his clinical nurse specialist. Knowing there was always someone he could contact by phone or email provided reassurance at difficult moments.

He is also an active member of the hospital’s bladder cancer support group, where he attends talks by nurses, researchers, and other professionals. These sessions have helped him feel more informed and less alone.

David’s advice to others

If David could offer one piece of advice to someone newly diagnosed with bladder cancer, it would be this:

“Don’t panic. Ask questions, take time to understand your diagnosis and do your own research. Educating yourself helps you feel more in control.”