Livestrong: Many cancer survivors not informed about fertility risks

Livestrong is surveying cancer survivors

Fertility literature for cancer survivors at the LIVESTRONG headquarters. KXAN Photo/ Alyssa Goard.
Fertility literature for cancer survivors at the LIVESTRONG headquarters. (KXAN Photo/Alyssa Goard)

AUSTIN (KXAN) — Austin-based non-profit Livestrong is in the final week of surveying cancer survivors about how well they’ve been informed about potential fertility risks.

The online survey, which wraps up on July 18, asks anyone who was diagnosed with cancer between the ages of 15 and 39 during or after the year 2006 to answer questions about what information they’ve received about their ability to have children and how they’ve acted on that information.

“About 80 percent of those people who are diagnosed between 15 to 39 [the reproductive years], are surviving at least 5 years,” explained Aditi Narayan, Program Manager for Research and Evaluation for Livestrong.

“With an increase in the number of people who are surviving cancer, we’re also thinking about quality of life,” Narayan said. “It isn’t enough to just think about their life during treatment, but what will their lives look life after treatment?”

Narayan is leading this survey effort which is funded by the Cancer Prevention Research Institute of Texas. Livestrong is hoping to take in answers from at least 1,000 people with at least 10 percent of those people being from Texas. She summarized the types of questions contained in the survey:

“Have they been informed by their health care team about potential risks to their fertility as a result of their cancer diagnosis any time in their cancer journey? Whether that was before they started treatment, during treatment or after they completed treatment? And if they were informed, did they take action to preserve that fertility?”

Narayan explained that surviving cancer comes with significantly increased risks for infertility and that less than half of the people diagnosed during their reproductive years report ever having a conversation with their healthcare team about fertility.

She said that the results of this survey will be given to medical professionals, researchers and insurance companies to better understand how cancer survivors experience fertility issues. Narayan hopes their work helps medical professionals inform the growing number of cancer survivors in the U.S. about how they can build healthy, happy lives after the disease.

Mike Thompson, a four-time cancer survivor who works at the organization, explained that in the 21 years since he was first diagnosed with cancer, he’s learned medical professionals don’t typically focus on discussing things like fertility risk with patients.

“The main focus, as it should be, is on getting the person to survivorship — to the other side of cancer, and that should 100 percent be the priority,” Thompson clarified. “But what if along that way we can train people, train doctors, oncologists, surgeons to focus on practical needs, to focus on how can we help preserve their fertility? How can we make [survivors] as whole as possible on the other side of cancer so we can help them live their own life, and create life as well?”

Thomspon knows all too well how fertility risks can go undiscussed.  He was first diagnosed with Leukemia at age 10. Over the next 5 years he underwent 75 surgeries. Doctors at the time didn’t expect he’d make it to age 18, and didn’t speak with him at all about his fertility.

“There just wasn’t any mention of preserving fertility, again it was just get me through all this, whether this was facial reconstruction or the bone marrow transplants,” Thompson said.

He didn’t go to get his fertility tested until he was 27. At that time, he learned that his bout of cancer at age 14 would prevent him from being able to have kids.

“When I got the final test, they said you have no viable sperm,” Thompson explained. While he feels lucky to be alive, the part of him that always dreamed of being a father was disappointed that he wouldn’t be able to have biological children.

Thompson explained that he would like to adopt a child some day, but for the time being he is focused on helping out other survivors through his work at Livestrong.

“When I think about my inability to have kids, I don’t get sad about it, I just want to work harder, so others don’t have to feel that feeling,” he said.

You can find a link to the survey here.

In addition to their survey research, Livestrong provides many other fertility resources for cancer patients and survivors. Since 2004 they have helped more than 8,500 cancer survivors access fertility services. They also work to educate health care professionals about cancer infertility.

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