v4n4 - In Search of Support & Information

Women diagnosed with cancer during pregnancy face not only the isolation of being a young woman with cancer, but also the flood of emotions that comes with pregnancy. Although the co-incidence of cancer with pregnancy is rare, women are connecting with one another while at the same time helping researchers gather information about the little-known subject

When Andrea Urban, a 39-year-old actress from New York, learned she was pregnant while taking Gleevec for chronic myelogenous leukemia, she faced the difficult decision of whether to terminate the pregnancy or continue taking the drug. Since her doctor could not offer her much information on the effect Gleevec could have on a fetus, Urban researched the subject herself and even contacted Gleevec specialist Brian Druker, MD. But he could not tell her any more than she already knew.

“It caused malformations in rats but not in rabbits. That’s all we knew,” she says. “It was a horrible decision about whether to keep the child or not and how it would affect my health and the baby’s health.”

She turned to The Leukemia & Lymphoma Society’s website where she found three pregnant leukemia patients. “I learned a lot there and it, along with other factors, helped me decide to keep my child,” says Urban, who has been taking Gleevec since her fifth month of pregnancy.

The Pregnant with Cancer Network, an international support group founded by three pregnant cancer patients, connects women by cancer and region and provides educational information, including journal articles and the organization’s newsletters. When co-founder Patty Murray was diagnosed with breast cancer during her first trimester in 1995 she wanted to talk to someone who had been in her situation. “When I joined a support group, I was paired up with a 60-year-old breast cancer survivor,” Murray says. “I needed to talk to someone who was young, who had young children or babies or was pregnant.”

By word of mouth, she found two other women who also were diagnosed while pregnant and delivered healthy babies within weeks of one another. A year later, the three women founded the Pregnant with Cancer Network, which now provides support to nearly 250 pregnant women with cancer each year.

Women searching for support and information have also found several researchers collecting information on the effects of cancer treatment on the fetus, as well as long-term effects on children exposed to treatments in utero. Because of the small population available for studies and the ethical dilemmas involved, gathering data firsthand from patients has been one of the best ways for researchers to learn more about the subject.

John Mulvihill, MD, receives calls and e-mails from doctors and patients from around the world with updates and questions about different treatments during different stages of pregnancy.

“We have to disappoint some patients that are given modern, brand new drugs because there are no published cases, but then we ask if the patient would be willing to submit an abstract of the medical aspect, once the outcome of pregnancy is known,” Dr. Mulvihill says. “Although it is not benefiting you, someone else may benefit from your experience.”