A woman was diagnosed with colon cancer at 31. She had unexplained abdominal pain for years and cycled through multiple diets.
For years, Naiké Vorbe tried to ease her abdominal pain. A dietitian advised her to cut gluten and lactose, but nothing worked.
Stomach discomfort wasn't new for her: throughout most of her adult life, she cycled from being constipated to having diarrhea. "I was constantly one or the other," Vorbe, 42, told Business Insider. When she was pregnant with her second child, she saw a gynecologist. Her bowel movements were explained away as common pregnancy symptoms.
Then the pain intensified. After she gave birth to her daughter, "going to the bathroom was more excruciating for me than giving birth," Vorbe said. She kept touching her stomach, knowing that something was wrong. Lying down, she felt a lump.
Shortly after, Vorbe, who lived in Haiti, booked an appointment with a GI. He immediately told her to fly to Miami from Haiti and see a specialist for colon cancer at the Sylvester Comprehensive Cancer Center at the University of Miami.
At 31, two months after giving birth, Vorbe was diagnosed with stage 3B colon cancer.
Fighting for her fertility
In 2014, a few weeks after her colonoscopy revealed a malignant tumor, Vorbe underwent surgery to get part of her colon removed. Months later, the cancer spread to her liver.
Vorbe had no idea what her immediate future would look like. She had a six-year-old daughter and a newborn back in Haiti, along with the rest of her family. Her then-fiancé (now husband), a film director, was traveling a lot for his first movie.
She said she asked her doctor to end her chemotherapy appointments on Thursdays, so she could fly back to Haiti on Friday and stay through Monday to be with her older daughter for the next 10 days. Then, she'd repeat the process.
Zooming out even more, she was concerned about how chemotherapy would affect her fertility. She wanted more kids, so she asked her doctor if she'd be able to have children after treatment.
She said he told her that saving her life was the priority. "But for my life to be worth it, I need the answer to this," Vorbe told him.
He connected her to a gynecologist who administered a gonadotropin-releasing hormone (GnRH) every month, which temporarily suppressed ovary function and reduced the risk of chemotherapy-induced infertility.
Vorbe described him as a "big angel" in her life. "Every ball I threw at him, he worked with me," she said.
She did 12 rounds of chemotherapy. After her 4th, she was scheduled to have part of her liver removed. She took a break from chemo for a few weeks to recover, marrying her husband back in Haiti. When she returned, the tumor on her liver was gone. The part was still removed out of caution, but when it was dissected, no traces of cancer could be found.
Vorbe wanted to quit chemotherapy earlier, now that the tumors were gone. Her doctor insisted on 12 cycles, to give her the best chance of long-term survival. Dr. Daniel Sussman, Vorbe's physician and a gastroenterologist at the University of Miami Health System, told BI that in 2014, when Vorbe was treated, 12 cycles of chemo was "probably considered what was necessary" to increase the likelihood of successful treatment.
An underlying genetic risk
As a child, Vorbe remembers having unexplained stomach pain. Her father would take her to the doctor to be tested for worms and parasites. When she developed the lump in her abdomen as an adult, a gynecologist initially told her to try an enema.
"I was overlooked and pushed to the side because I was so young, I looked healthy," she said.
Additionally, she said discussions around bowel movements are taboo in Haitian culture. "You don't really speak about gastrointestinal issues."
When she was diagnosed with colon cancer, she took a recommended gene panel and learned she had Lynch syndrome, a symptomless genetic condition that raises the risk of developing colon cancer. She wondered if her grandmother, who died at 48, had it, too. "Nobody ever understood that's what happened to her," Vorbe said.
Sussman, who specializes in Lynch syndrome and was involved in diagnosing Vorbe, said that because the field of genetics is so young, entire families may have unknown genetic predispositions for certain cancers. Naiké "ended up being that first person in the family to undergo that genetic evaluation," he said.
Her mom was diagnosed with uterine cancer earlier
Vorbe, now a mom of five, has been in remission for 10 years. As a former colon cancer patient, she gets the recommended yearly colonoscopies. She also gets an endoscopy every two years, as Lynch syndrome puts her at risk of developing other cancers.
She said learning about Lynch syndrome not only helped her understand her diagnosis better. It also helped her mom, who carries the same genetic risk, to get diagnosed with uterine cancer early.
Her mother had a polyp in her uterus that was left alone because it hadn't grown over the years. When she told her gynecologist that Vorbe had Lynch syndrome and was being treated for colon cancer, her doctor immediately scheduled a biopsy. Vorbe's mother was diagnosed with stage 1 uterine cancer and had her uterus removed.
Vorbe said her family is what kept her going through treatments. She remembers thinking "There's no way I can die: I have these two beautiful little girls right in front of me. I want to see them grow up."
Despite being over a two-hour flight away, her family buoyed her throughout her recovery. Her godmother flew with her to her first chemo appointment. Her cousins flew to Miami to be in the house after the appointment, to cheer her up. In Haiti, her sister-in-law would care for Vorbe's baby overnight, then bring her to Vorbe in the morning.
"I had so much love and light around me, it just carried me," Vorbe said.
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