Harlem woman starts a group of young women with reproductive system cancer to raise awareness

New York September is National Cervical Cancer Awareness Month. The disease mostly affects older women, but a young woman from Harlem has found hope of helping others cope.

Amanda Fitzpatrick checks in regularly with her oncologist at Mount Sinai, as she approaches three years without a uterus. At age 26, she developed the most common gynecological cancer, which often goes undetected.

“Any abnormal bleeding should be looked at,” said Dr. Stephanie Blank, director of gynecological oncology at Mount Sinai.

Planck’s department works to understand and break down disparities between outcomes in race and age.

“Guidelines from our national community say biopsies should only be done in people under 45 if they have strong risk factors such as obesity or a genetic predisposition to developing cancer,” Blank said. “If you follow the instructions, you may miss a diagnosis like that.”

Fitzpatrick went to the emergency room when she started bleeding uncontrollably. The doctor prescribed her pills, but Fitzpatrick followed up with a biopsy.

“This is so important that she stood up for herself,” Planck said. “She knew something wasn’t right.”

While it is believed to be among the most treatable cancers, reports from the Centers for Disease Control show that the number of uterine cancer cases and deaths across the country continues to rise. New York has the second highest case rate and fourth highest death rate.

Black women die twice as often as white women.

“Even when people see the right doctors, they still don’t get the right care,” Blank explained. “So there are all these fundamental structural issues that are really holding people back from getting the best possible outcomes.”

Through a customized plan, all traces of Fitzpatrick’s cancer were gone within the first year of her diagnosis. The cancer returned after five years.

“It’s like, ‘We had to have a hysterectomy, like, this is really dangerous,'” Fitzpatrick recalled hearing on the phone.

Ultrasound images showed the progression as the cancer was feeding on her uterus. Single and without children, Fitzpatrick felt her world had been transformed.

“I have to make this new life and this new journey without wombs and hot flashes and menopause and everything, and how am I going to live?” asked Fitzpatrick herself. “And it took a lot of acceptance.”

Doctors preserved and frozen Fitzpatrick’s eggs for a secure future and referred them to the Mount Sinai Woman To Woman support group for female cancer patients.

“Everyone here looks like they’re retirement age and I’m not fit,” Fitzpatrick remembers thinking.

Fitzpatrick has created her own group, “Youo Young For This,” and hosts beauty days and pizza parties for women with gynecological cancer in her age group.

“I love them,” Fitzpatrick said of her new friends. “I can talk because this group.”

Talking about and destigmatizing symptoms offers a solution to some of the systemic barriers to care. Mount Sinai is making an effort to reach out to its neighbors in Harlem, and Planck encourages researchers to intentionally diversify clinical trials.

“When you work in a community with a lot of black people, you really need to think about what the community needs,” Planck said.

The causes of uterine cancer are still unknown. Research aims to advance, while statistics slide. The human factor can make the biggest difference.

For support and resources related to gynecological cancer, click here.

Do you have a story idea or tip in Harlem? Email Jesse by clicking here.

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