Addressing gaps in support for women with bladder cancer: closing a gap that starts at diagnosis

The final session of Public Day at the World Bladder Cancer Patient Forum 2026 in Hong Kong, Addressing gaps in support for women with bladder cancer, was chaired by Christine La Rose of BEAT Bladder Cancer Australia, with Angela Pelletier of Bladder Cancer Canada, Hilda Kwok, Nurse Consultant in Urology at Prince of Wales Hospital in Hong Kong, and Dr Makarand Khochikar, Head of Urology and Urologic Oncology at KIMS Hospital, Sangli.

One in four patients is a woman, yet women are still told their symptoms are something else. Blood in the urine gets attributed to a urinary tract infection or to perimenopause, and by the time the real cause is found, the cancer is further advanced.

Every hand in the room goes up

Christine was diagnosed at 49 with high-grade muscle-invasive bladder cancer, having never smoked and with no other risk factors. Her only symptom was blood in her urine, not much and not constant. Her GP diagnosed an infection, then another, then another. The next suggestion was a gynaecologist. Instead they agreed on an ultrasound that included the bladder, and found the tumour immediately. Four weeks later she had her bladder, uterus and pelvic lymph nodes removed.

Angela’s symptoms started at 37. Treated for an infection and sent home, she returned weeks later with a photograph of visible blood clots and told them she thought she had bladder cancer. A physician’s assistant told her to slow down. Another doctor sent her for a cystoscopy, which found the tumour. Within a year it was muscle-invasive.

Angela now runs a women’s group in Canada, and offered the detail that silenced the room: whichever women are in the room on a given night, when she asks how many were treated for a urinary tract infection before diagnosis, every hand goes up. Our own global survey says the same, with 69% of women diagnosed with another condition first and 39% told it was an infection. In Australia, five-year survival for women is around 10% lower than for men.

The biology is not the problem

Dr Khochikar challenged the long-held belief that bladder cancer is simply more aggressive in women. That, he said, is largely a myth. The disease behaves the same way; the outcomes differ because the diagnosis comes later.

His recommendation was the most concrete of the session, and one for advocates to push: a basic ultrasound scan for anyone presenting with blood in the urine. It is inexpensive, takes minutes, and shows whether the bleeding comes from the kidney, ureter or bladder. A urine test, antibiotics and “come back if it continues” is what costs women months.

He also reminded the room that risk factors vary by region. Told in 1998 that he would see little bladder cancer among women in India because women there did not smoke, he saw high numbers anyway, driven by smokeless tobacco used under the lip or on the gums.

What nobody asks about

On surgery, Dr Khochikar was direct. Where the uterus must be removed with the bladder, he preserves the ovaries so hormonal function continues and keeps the vagina as long as possible so sexual function can be maintained, which takes real surgical experience. He also warned against delaying cystectomy too long in the hope of saving the bladder, since the disease becomes harder to treat: cystectomy, he said, often comes too late.

Hilda brought the nursing view from Hong Kong. Women there often carry the caring role in the family and absorb their own distress rather than burden anyone. Almost every patient tells her she needs no guidance on intimacy, while some mention sleeping in a separate room because the stoma bag is noisy. Her question was whether those answers reflect what women actually feel. Her conclusion: nurses need training and support from psychologists and sexual health specialists, because right now that help does not exist to give.

Why women need to hear it from women

Bladder Cancer Canada ran several support groups but none for women only, so Angela started one four years ago. Women come to ask about sexual health, body image and staying dry. When she was diagnosed, she sat in a room of older men.

Her advice to any woman facing a cystectomy is to speak to another woman, one with a neobladder and one with a urostomy, and ask what a whole day really looks like. That matters more for women, since neobladder surgery is more common in men and technically harder in women. Christine, whose Australian group is mixed, splits it in two at least once a year for exactly these conversations, and has lost count of the times she has lifted her shirt to show a newly diagnosed woman what it actually looks like.

What would close the gap

Earlier diagnosis through simple imaging at the first sign of blood in the urine. Surgeons who preserve what can safely be preserved. Nurses equipped to raise intimacy and mental health without waiting to be asked. And rooms where women can ask other women what they will not ask anyone else.

Bladder cancer is not a men’s disease. Read our Women Unseen report, and share our information on women and bladder cancer with anyone who has been told their symptoms are probably just an infection.