Capturing lived experience with bladder cancer: three journeys, one message

On Public Day of the World Bladder Cancer Patient Forum 2026 in Hong Kong, the session Capturing lived experience with bladder cancer brought together three people who have lived it: Amit Rele, joining online from India, Junichiro Sano of the Patient Association of Bladder Cancer Japan, and Amy Samuel, President of Bladder Cancer Sénégal. Consistently one of the Forum’s most valued sessions, it gave the day its most personal hour.

Amit Rele: “patients are only limited by their beliefs”

Amit was diagnosed in 2021, aged 45, entirely by accident. He had no symptoms, was exercising and running regularly, and went for a routine check-up in Singapore. A scan found a tumour, and the diagnosis was high-grade carcinoma in situ (CIS).

Having spent nearly 30 years working in the pharmaceutical industry, he found himself on both sides of the fence at once. Within five days he had read enough to become, in his words, a pseudo expert. He then consulted 14 specialists across Singapore, India, the US, Italy and the UK, wanting to be certain. His reflection on that is worth hearing: in a strictly regulated system, clinicians follow approved protocols, while elsewhere doctors may offer combinations that are not standard, and the result for a patient searching for answers is being pulled in a dozen directions at once. At some point, he said, you have to trust your doctor and commit to the path.

His treatment was gruelling. After mitomycin brought no benefit, he went through more than 20 BCG cycles, which he described as like having a severe urinary tract infection for nine months of the year, with burning, bleeding, fever and chills. He kept working throughout, scheduling treatment on Fridays so he could recover over the weekend, and told almost nobody at the office. In early 2023 a severe reaction to BCG put him in hospital for almost three weeks with every organ measure out of range, and treatment had to stop. Then came recurrence. The photograph of him smiling that appeared in the Forum’s own mailers was taken, he told the room, on the day he learned his cancer had returned.

In September 2023, with the disease spreading towards the prostate, he had his bladder removed. What helped him prepare was an online patient support group, where people who had been through it told him honestly what to expect, something he said carried both him and his family through the first months afterwards.

Three years on he has just marked what he calls his third stoma anniversary. He is back at work, has moved countries, and travels widely. He spoke frankly about the parts nobody warns you about, from not being able to tuck in a shirt to rebuilding confidence in how you dress, and about leaving an employer who was only moderately supportive. He also showed photographs: at the gym three times a week, playing golf, climbing into a hot air balloon basket, go-karting, canoeing, swimming in the sea, and taking long-haul flights. His wife Dipali, who shaved her head and donated her hair to a cancer charity after his surgery, was, he said, his pillar throughout.

Junichiro Sano: the opposite of laughter is not seriousness, it is isolation

Junichiro is a university lecturer who has spent years researching humour and laughter. He came to the stage as neither academic nor comedian, but as a man whose life was reshaped by cancer twice over.

In 2020 his wife Keiko, a nursing director, was diagnosed with ovarian cancer. A year later he was diagnosed with bladder cancer, and their household became two people fighting in parallel under one roof. Keiko’s first lesson to him, when fear had him paralysed, was to build a support team so that neither of them faced it alone. She died in February 2024, having completed a book about living while facing illness, written from her position as both a nursing professional and a patient, and honest about how often society fails survivors at the moment they most need support.

What Junichiro found afterwards was that meeting other bladder cancer survivors in Japan was extraordinarily hard. The disease involves urinary symptoms and intimate bodily functions, and Japanese culture tends to avoid subjects that make daily life uncomfortable, so bladder cancer sits in the shadows. He knows that isolation intimately, having gone through TURBT, further treatment and BCG, and remaining under observation after three recurrences.

His response was to move. Carrying Keiko’s book, he travelled the country and attended 41 of 52 Relay For Life events, seeking out anyone else carrying the same weight. He founded an online support group where men can speak openly about their diagnosis without shame, joined the patient and public panel at the National Cancer Center Japan, and worked with the Japanese Association of Supportive Care in Cancer. That search for connection eventually led him to the patient association he now helps lead.

His closing thought came from his own research. The opposite of laughter, he said, is not seriousness, it is isolation. When people are isolated, they lose their joy, their hope, and even the memory of those they loved. Breaking the silence around bladder cancer, he argued, is what allows everything else to follow.

Amy Samuel: from a 45-day wait to BBC Africa

Amy’s diagnosis came in 2022, two months after her fiftieth birthday. She woke with no symptoms at all, then developed sudden incontinence within a few hours. Senegalese with an American upbringing, she called a doctor immediately, noting that in her experience many people wait far too long before seeking help.

A scan found a tumour. Then came the detail that shapes so much of care in the region: confirming whether it was cancer required a biopsy, and in Senegal that meant a 45-day wait, because samples are sent to Europe for analysis. She refused to wait. Her twin sister booked her a flight to Portugal that same night, and the diagnosis came back as T1 bladder cancer. For a family of thirteen siblings who had already lost a sister to cancer, it was a severe blow, made harder because Amy had never smoked, had no family history, and had never heard of bladder cancer.

Searching online after her surgery, the first thing she found was the Coalition. She credits our resources and the people who answered her questions, often on Instagram, with guiding her through the months that followed.

She then turned that experience outward. With a BCAM Grant, she ran Senegal’s first digital bladder cancer awareness campaign, staged a fashion show with participants wearing bladder cancer T-shirts, distributed 200 awareness pins, and spoke to more than 400 young people on World No Tobacco Day about smoking and bladder cancer. For a month she gave daily television and radio interviews, including to BBC Africa, and believes it was the first time bladder cancer had been discussed at that level in West Africa.

Her focus now is visibility, early detection, and open discussion, particularly among women, since many in Senegal assume bladder cancer affects only men. She posts regularly about her own journey, and has become a point of contact for families across the continent and beyond, guiding people who write to her towards urology services and explaining what to expect. She was not given bladder cancer, she told the room, in order to feel sorry for herself.

What the three had in common

Three continents, three health systems, three very different diagnoses. What connected them was what happened after treatment: each found their footing through other people, whether an online group of patients who had already had surgery, a support group created because none existed, or a coalition found through a search engine at the worst moment. And each turned their own experience into something other people could use.

You are not alone in this. Find support, information and people who understand through our support community and our free patient and carer resources. If you would like to share your own story with our community, we would be glad to hear from you.