Monica Austin-Cox remembers well the day a routine pelvic exam changed her life forever.
Her gynecologist palpated a lump that was initially believed to be related to Austin-Cox’s ovaries. But further tests revealed that it was actually a mass in his bladder.
She was quickly referred to a urologist, who performed a cystoscopya procedure that involves examining the inside of the bladder with a camera. The results confirmed her worst fears: Austin-Cox had bladder cancer.
The news was shocking: “I had never heard of bladder cancer,” said Austin-Cox, who was 30 at the time of her diagnosis and had never smoked cigarettes, but had been exposed to secondhand smoke much of her life. life. “The signs and symptoms, such as blood in the urine, were things I had experienced, but I attributed them to the repeated urinary tract infections (UTIs) I had been suffering from. I had always taken the antibiotics prescribed by my doctor and they just disappeared. So I didn’t think much about it.”
Read: Living with bladder cancer >>
His cancer was quickly diagnosed as stage 1, non-muscle invasive, an aggressive form of cancer that required close monitoring and repeated treatments. For the next four years, Austin-Cox found herself in a nightmarish medical battle that included surgery to remove the mass in her bladder and follow-up cystoscopies every three months. Each time, he learned that the cancer had returned.
“There was a constant anxiety wondering if the cancer would come back,” he recalled of the too-short periods between his checkups. “It was overwhelming.”
How Bladder Cancer Is Different in Black Women
(Photo/Monica Austin-Cox) Monica Austin-Cox in an undated photo.
Adding to Austin-Cox’s distress, she found little in terms of support groups and resources available for women battling bladder cancer, especially black women like herself, near where she lived in North Chesterfield, Virginia. And she also couldn’t find much information on the Internet about how women experience the disease. “It’s not just a ‘white man’s disease,’” he said, referring to a widespread myth. “Black women suffer from bladder cancer too and we deserve the support and resources we need to fight this horrible disease.”
Men are They are more likely to develop bladder cancer than women, and white people are about twice as likely to develop bladder cancer as black and Hispanic people. However, a growing body of research confirms that black women are increasingly struggling with the disease and are often diagnosed in later stages, facing worst results as a result.
Studies have also found:
- Compared to white women, black women account for a higher incidence of bladder cancer and face treatment disparitiesregardless of insurance status, education, the presence of other health conditions at the time of diagnosis, or the stage at which the disease is discovered.
houston investigator Heather Honoré Goltz, Ph.D.cancer survivorship and disparities expert, licensed clinical social worker and professor of social work at the University of Houston-Downtown, said women are often misdiagnosed, in part because symptoms such as frequent urination or blood in the urine are confused with menopause or urinary infections, as Austin-Cox experienced. According to Goltz, black women often face elevated risks of contracting the disease related to exposure to harmful chemicals in certain professions, such as exposure to hair dyes while working as a hairdresserenvironmental toxins from where they live and the long-term effects of smoking, a leading cause of bladder cancer.
“Like the liver, the kidneys’ function is to filter harmful toxins from the bloodstream and deliver them to the bladder,” Goltz explained. “That’s why exposure to certain chemicals can increase a person’s risk of bladder cancer.”
She attributes the worse outcomes faced by Black women with bladder cancer to long-standing bias issues within the healthcare industry. “A major issue is the way health care systems interact with women, particularly Black women,” Goltz said, noting that studies show that even with health insurance, private and public, Black patients tend to receive a lower quality care compared to their white counterparts.
“The assumption is that if you have access to quality care, you will receive gold standard care, but that is not always true. “What we are finding is that a large percentage of black patients, and particularly black women, are not receiving the highest level of care.”
Read: Why sex and race matter more in bladder cancer treatment >>
Steps Black Women With Bladder Cancer Can Take to Have a Better Prognosis
Self-advocacy is vital to detecting and diagnosing bladder cancer in the early stages, when it is most treatable.
“Be alert to any changes you experience in your body and any concerning symptoms, such as painful urination or frequent urination,” Goltz said. “Don’t automatically dismiss it as related to aging or menopause. Discuss your symptoms with your primary care doctor and request follow-up testing or even a referral to a urologist to be sure.”
Austin-Cox can relate to the concerns about quality of care that Goltz raised. Early in her diagnosis, she felt dismissed and neglected by her urologist, and received repeated requests from his office to reschedule follow-up exams, despite the severity of her case.
“The nurse would call and say, ‘He won’t be able to see you this week, would you like to reschedule?’” And I said, ‘No, because the cancer keeps coming back,'” he recalled.
Frustrated, she finally took control of her medical care and sought out a new urologist who provided more attentive care and initiated more aggressive treatment, marking a turning point in her treatment. “Never be afraid to stand up for yourself,” he said.
Five years after her diagnosis, Austin-Cox was declared cancer-free. He now visits his urologist annually to look for any signs of the disease.
As for the lack of support and resources available to women fighting bladder cancer, Austin-Cox, now 50, said it has improved slightly in the two decades since her diagnosis, but there is still a big gap. need today. She is grateful for the support of her husband, family and friends who helped her during her cancer journey. To this day, she gives back to others by volunteering and participating in advocacy efforts with Bladder Cancer Advocacy Network (BCAN), based in Bethesda, Maryland.
Austin-Cox added: “We all need to do our part to raise awareness about the fact that women do get bladder cancer and our lives matter too.”
This educational resource was created with the support of Daiichi Sankyo and Merck.
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