In July 2013, Ivanna Vidal learned she carried a mutation in one of her genes, the BRCA2 gene, that increases the risk of breast and ovarian cancers. About a year later, she was found to have a mass in her right ovary just months after an ovarian cancer screening came back negative.
Last month, during what she thought would be a preventative surgery to remove her ovaries, fallopian tubes and uterus, the mass in her ovary was biopsied. Doctors diagnosed her with advanced-stage ovarian cancer.
The diagnosis didn’t devastate her, though. She recently sat up in bed at UM’s Sylvester Comprehensive Cancer Center in Miami, eagerly sharing her story, even after a fourth round of chemotherapy. Vidal was one of the patients at Sylvester’s newly opened Ovarian Cancer Early Detection Clinic.
The clinic wants to identify women at a high risk for developing ovarian cancer by screening family and personal cancer histories and to provide preventive strategies to the women. Vidal, 41, for example, has an extensive family history of breast cancer, but not ovarian cancer.
“It’s all good,” she said. “I’m learning a lot from this and I’m appreciating the experience.”
As with most other cancers, the risk of being diagnosed with ovarian cancer increases with age. One preventative strategy for post-menopausal women, or for women who are finished with childbearing, is to remove the ovaries and fallopian tubes.
Other women, like Vidal, who have strong family histories of certain types of cancers need to be made aware of their risks and what they can to minimize them.
Dr. Brian Slomovitz, division director of gynecologic oncology at Sylvester, said women with BRCA mutations have a 20- to 40-percent chance of getting ovarian cancer and up to an 80-percent chance of getting breast cancer.
BRCA is not the only gene that, when mutated, can cause cancer.
Talia Donenberg, senior cancer genetics counselor for the University of Miami/Jackson Memorial Hospital, said the percentage of women with hereditary ovarian cancer has jumped from 10 percent of all cases to between 15 and 20 percent because of the discovery of more genes involved in causing inherited cancers.
Slomovitz said Vidal’s cancer was caught early enough to give her a good prognosis. But that’s not usually the case for ovarian cancer patients.
Ovarian cancers are the deadliest of all gynecologic cancers, Slomovitz said.
“Most women with ovarian cancer are diagnosed with an advanced-stage disease,” he said. “In the past, we thought it was a silent disease. We know now that that’s not the case.”
Ovarian cancer does, in fact, show symptoms: abdominal pain, bloating or swelling; frequent urination; constipation and pelvic pain. But those symptoms are not specific to women and can mimic other common problems individuals may have, like gastritis or urinary tract infections.
Vidal experienced some bloating, but she attributed it to whatever she had for lunch. Slomovitz said the key is for women to be cognizant of their symptoms and to pay attention to how long they last. It should be no longer than 10 to 14 days.
Another problem faced in treating ovarian cancer is identifying it at earlier stages.
“Currently, there is no good screening test for ovarian cancer,” Slomovitz said.
Donenberg said high-risk women are those with a first-degree relative with ovarian cancer, a first-degree relative with breast cancer under the age of 50 and/or a personal history of breast cancer.
A woman visiting the clinic can see a gynecologic oncologist, genetic counselor and a radiologist trained in identifying gynecologic cancers all in the same visit. She will get blood work done and have the results of her ultrasound read to her instead of waiting weeks for the results.
“Life is difficult. People are busy. We as healthcare providers realize that we can’t just focus on the treatment of really bad diseases, we need to focus on the prevention of some of those diseases. If we’re going to offer preventive strategies and be successful at it, we need to make sure it’s convenient for our patients,” Slomovitz said.
The clinic will also have a nurse navigator who will help patients navigate through the health care system and get them the appointments they need.
“A lot of these women feel lost,” said Donenberg. “They won’t know where to go, where to get care, who to talk to.’’
Vidal tries not to let the cancer get to her. The thing she thought would devastate her the most, losing her hair, has not impacted her.
“I’m surprised about my attitude toward my hair,” she said. “I had to shave it. It gets to the point where you just have to grab the shaver G.I. Jane-style and take it off.”
Vidal does miss her previously active lifestyle, the energy she used to have and her favorite foods. She loves sushi, ceviche and medium-rare meat, but because of the risk of infection, everything she eats now has to be well-cooked.
As a licensed clinical social worker, she hopes to help women going through something similar.
“People talk about waiting for the storm to pass to see the rainbow,” Vidal said. “I remember hearing someone say it’s not about waiting for storm to pass, it’s about learning to dance in the rain. I’m trying to dance in the rain.”