Barbara’s Story: A Surprising Cancer Diagnosis in More Ways Than One
Barbara Kail was working in Spain in the early part of 2018 when she suddenly started experiencing abdominal and gastrointestinal distress. When Barbara returned to the U.S. that spring, she landed in the emergency room. That ER visit extended into a 10-day hospital stay for tests and monitoring. To her surprise, she was diagnosed with peritoneal cancer, a rare cancer biologically similar to ovarian cancer that can appear in tissues lining the abdomen, uterus and bladder.
Barbara recalls that her reaction was not only tied to the cancer diagnosis itself, but also in response to the type of cancer for which she was diagnosed. Barbara was born with Turner syndrome, a condition that affects only females, resulting in the absence of one of the X (sex) chromosomes. People with Turner syndrome have abnormalities in development of reproductive organs, delayed puberty and are short in height.
“I honestly thought it was crazy,” says Barbara, with a laugh. “Here I am. I have Turner syndrome, which means I don’t have a uterus, but now I have peritoneal cancer.”
Peritoneal cancer is extremely rare but mimics the looks and behavior of ovarian cancer. However, unlike ovarian cancer, peritoneal cancer can occur in women whose ovaries have been removed, notes June Hou, MD, Barbara’s physician and a member of the Herbert Irving Comprehensive Cancer (HICCC) at NewYork-Presbyterian/Columbia University Irving Medical Center.
“The first time I met Barbara, I thought she was such a force of nature. She spoke to me about what mattered most to her: her family, her work and her travels, all of which gives her such joy,” says Dr. Hou, associate professor of obstetrics and gynecology at Columbia’s Vagelos College of Physicians and Surgeons. “Often, signs of peritoneal cancer can be vague and include bloating, bowel habit changes and pelvic discomfort. I appreciated how intuitive Barbara is about her body and pursued care when her body just didn’t feel right.”
Barbara had already been coming to NewYork-Presbyterian/Columbia for her health care prior to the cancer diagnosis. Before long, one of her specialty doctors connected her to Dr. Hou.
“She's incredible. She spent so much time with me, laying out a plan for my treatment and detailing every single part of it,” says Barbara, 72, a Bronx resident. “There is something very special about Columbia and NewYork-Presbyterian. There is something so special about the way they treat patients—never feeling rushed, never feeling like ‘a number’.”
Barbara underwent surgery and chemotherapy in the following months. Unfortunately less than six months after completing maintenance chemotherapy, Barbara suffered a recurrence; the cancer returned in an adrenal gland. After surgery to remove the adrenal gland in 2021, Barbara has since been feeling great, healthy, and now more than four years since her diagnosis, is considered disease-free.
A new chapter of learning
In August of 2022, Barbara celebrated her retirement from Fordham University where she spent 30 years on faculty, specializing in social work research and policy after completing her doctorate from Columbia’s School of Social Work. An advocate at heart, Barbara has been an active member of several organizations that address ageism. Now that she has completed half of her novel titled, Toledo, the Transito and the Missing Torahs, Barbara has also come to think of herself as a writer.
She has had many ups and downs since the cancer diagnosis. While there were times where she wouldn’t leave her couch—particularly early in her treatment—Barbara says that these days, she remains much more ‘in the moment’ and focused on new experiences.
“I'm sorry if it sounds hokey, but I try and live more fully now,” says Barbara. “Every day, I try to appreciate something new, see something new, learn something new. I've always felt a day where I didn't learn something new was wasted. Learning is what I love but it's even more important now.”