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When Jonny Imerman was diagnosed with testicular cancer at the age of 26, there really wasn’t any place for him to consult about fertility preservation other than his doctor.

That dearth of information for people newly diagnosed with cancer has led to the creation of MyOncofertility.org, a newly created Web site that provides cancer patients and their families with resources, information and options for fertility preservation.

“There was nothing out there about it,” said Imerman, founder of Imerman Angels, a Chicago-based one-on-one support organization for people with cancer. “My urologist was on top of it and recommended that I bank sperm. Does every doctor do that? Definitely not.”

 The project started when researchers at the Oncofertility Consortium at the Feinberg School of Medicine at Northwestern University conducted a study of adult survivors of childhood cancers at Children’s Memorial Hospital, according to Teresa Woodruff, a professor of obstetrics and gynecology at Feinberg and head of the Oncofertility Consortium. While their parents’ priority at the time of their diagnosis was saving their lives, the survivors in their 20s and 30s were concerned about their ability to have children.

“They wished they could have talked to people in their position now back then,” Woodruff said.

While fertility has always been a concern for cancer patients, Woodruff said the need for patient education is coming to the public’s attention now for three reasons:

•Young cancer patients themselves have pushed for it through advocacy groups. 

•Better cancer treatments are keeping patients alive and healthy enough to consider starting families. 

•Advanced reproductive technologies are giving patients more options for fertility preservation.

Compounding the importance of considering fertility preservation is the speed with which patients must make their decisions. Treatment sometimes starts almost immediately after diagnosis. For men and women, the decision to preserve sperm or eggs, embryos or ovarian tissue must be made before treatment begins.

“After chemo is too late,” said Imerman, whose story is featured in videos on the Web site.

MyOncofertility.org tailors its information to patients, parents or partners of patients in the form of animations, videos of experts and survivors, checklists, action items and links to even more resources. Visitors can input questions they want to see answered on the site in the future, and the organizers hope to be able to allow users to upload their own videos with their survival stories to help others, according to Kemi Jona, an associate professor at Northwestern who contributed to the development of the site.

“They can access only what they want at the level they want it,” he said.

Although some doctors make a point to discuss fertility preservation with cancer patients, many still do not. Woodruff emphasizes that patients must educate themselves and bring up the issue with their physicians.
“If you’re 22 and you have your reproductive future ahead of you, you should push your provider on the issue of fertility preservation,” Woodruff advised.

In addition to hard facts of fertility preservation, MyOncofertility.org provides patients with videos of survivors, their partners and parents discussing their experiences and decisions regarding their fertility. The developers of the site worked with Imerman and Gilda’s Club, an organization that provides support to those affected by cancer, to find participants. The interviews are candid, and the resulting stories are informative, interesting and moving.

“If you want to help people you’ve got to throw all your cards on the table,” Imerman said. “It shows people going through it that there’s a way out of the dark tunnel.”

MyOncofertility.org is just one project by the Oncofertility Consortium to further the goal of exploring the reproductive futures of cancer survivors. In addition to Northwestern, where the program was founded, the University of Chicago, Evanston NorthShore University Health System, University of Illinois Chicago, and 46 other hospitals around the country are part of the group. They host a scientific meeting for researchers and physicians, hope to launch a Web site aimed at physicians who treat cancer patients next year, and continue to sponsor a program at Feinberg to get high school girls interested in research science.