New web site helps cancer patients explore fertility preservation

New Web Site Helps Cancer Patients Explore Fertility Preservation

When a woman, man or teenage girl or boy is diagnosed with cancer, there is only a brief window of time to learn about options for preserving his or her fertility before treatment. Cancer therapy often has irreversible effects on a patient’s fertility. But it hasn’t been simple for patients and their families to get information. Oncofertility—the intersection of oncology and reproductive medicine—is a new, rapidly advancing field, and many physicians aren’t familiar with the latest developments.

Northwestern University has launched a new interactive Web site, http://www.MyOncofertility.org, to meet that growing need. The Web 2.0 style site teaches patients about the potential effect of cancer and treatments on their fertility, options to preserve their fertility and offers resources for discussing these issues with their doctors.

“It’s overwhelming for cancer patients to have to make urgent decisions about fertility preservation at the same time that they are struggling to come to terms with their recent cancer diagnosis and imminent treatment plan,” said Kemi Jona, architect of the new web site and a research associate professor in learning sciences and computer sciences at Northwestern’s School of Education and Social Policy. “This offers them a critical resource that is easy to use and understand.”

The site is an educational project of the national Oncofertility Consortium of Northwestern University’s Feinberg School of Medicine. The consortium is headed by Teresa Woodruff, chief of the Feinberg School’s fertility preservation division and the Thomas J. Watkins Professor of Obstetrics and Gynecology. The consortium is a $21-million research, clinical and education program targeting fertility threats posed by cancer treatment.

The multi-media web site includes more than 200 expert videos and survivor stories. Visitors can get answers to their questions from leading Northwestern physicians and scientists and hear how other cancer survivors and their families made decisions about fertility preservation in the face of a cancer diagnosis.

In the future, MyOncofertility.org will allow patients to connect with other survivors via a message board and to post their own personal stories and videos. There also are links to other resources and survivor networks. Patients can download questions to discuss with their doctors.

“It’s a warm and friendly site because we knew this would be used during an emotionally fraught time,” said Jona. “It’s an inviting a refuge where patients and their families can come and feel they can get information at the level they are ready for.”

Jona worked with a focus group of cancer survivors from Gilda’s Club Chicago and Northwestern Memorial Hospital to make sure the site would site would meet their needs and be the kind of resource they want at the time of their diagnoses.

The new web site was unveiled Sunday, Sept. 14, at the annual meeting of the Oncofertility Consortium in Chicago.

In addition to the new Web site, Northwestern has developed three short, original documentaries about patients facing cancer and fertility. The documentaries can be viewed at http://oncofertility.northwestern.edu/for-patients/videos.

The documentaries were produced by Michael Graziano and Ernie Park at Uji Films, and by Maria Finitzo and Kartemquin Films. The documentary project was coordinated by Sean Zehnder, a research associate in Northwestern’s School of Communications.