To mark World Cancer Day, we spoke to Mary Lovett, a bladder cancer patient, who was finally diagnosed after a long and frustrating journey. Her story demonstrates how much work is needed to close the diagnosis gap for women so stories like hers become less common in the bladder cancer community.
“I’m still bleeding!” Mary told her local GP after yet another return to the doctors about an ongoing, suspicious, issue.
“It’s just another infection,” she was told, again, by her doctor. “I’ll give you some more antibiotics.”
Mary tried to reassure herself that doctors know better.
However, after another very bad bleed which went on day and night, she took herself to A&E. She wasn’t going to be brushed off this time.
She explained to a doctor about her persistent urology issues.
“Nobody will listen to me,” she told him. “I need to be referred.”
Eventually, he referred her to a urologist at the hospital, but again she was ignored.
Mary had to self-catheterise, so she found that her bleeding issue was frequently blamed on that. But she knew her own body and knew that something wasn’t right.
“I’m not having it!” she pled. “I NEED to be investigated.”
He agreed to give her a flexible cystoscopy and was quick to identify red patches.
But you guessed it, they were blamed the patches on her having to self-catheterise, again.
This rang alarm bells in her head – but not his!
Once again, she found herself pressing to be referred and investigated further. He finally agreed to send her for a biopsy.
After a long and frustrating couple of years of trying to get to the bottom of the cause of her bleeding and countless antibiotic prescriptions and doctors’ appointments, she was unfortunately told she had high-grade non-invasive bladder cancer.
Her story of late diagnosis is not a rare one. Mary’s determination for answers is what finally got her a diagnosis- but this shouldn’t be the reality for so many bladder cancer patients.
A lack of funding and knowledge of the condition means that often people with bladder cancer must wait too long for a diagnosis. In many cases, there are even bigger delays in diagnosing bladder cancer in women resulting in significantly worse outcomes. The most basic symptom—blood in the urine, is often misdiagnosed. It may be seen as a symptom of postmenopausal bleeding, simple cystitis or as a urinary tract infection. As a result, a bladder cancer diagnosis can be overlooked for up to a year or more- just like what happened with Mary.
We need to close this gap and get adequate care, treatment, and diagnosis for people with bladder cancer.
Mary wants everyone to feel empowered to stand their ground if they feel they are not being listened to and insist on further testing. As we know from research on women, who are frequently misdiagnosed, her advice is invaluable and more important than ever in the Covid19 world we now live in.
“The support and information I received from Fight Bladder Cancer has been amazing,” she added.