About 70,000 adolescents and young adults (ages 15-39) are diagnosed with cancer each year in the United States. During cancer treatment, adolescents and young adults (AYA) may focus all of their energy on getting through treatment. Some may not have spent much time talking or thinking about life after cancer treatment, and the impact their cancer treatment may have on their survivorship. Life after treatment often presents a new set of challenges and fertility may be one of the challenges that survivors face once treatment ends and family planning begins.
The importance of fertility options for AYA’s diagnosed with cancer has not been lost on the National Cancer Institute (NCI), which is one of 11 agencies that compose the Department of Health and Human Services (HHS). The NCI, established under the National Cancer Institute Act of 1937, is the Federal Government’s principal agency for cancer research and training. Recently, the NCI featured oncofertility in the NCI Cancer Bulletin, a distinguished news source for the latest in cancer research, in an article entitled, “So Others May Benefit: Young Cancer Patients and Survivors Take Part in Oncofertility Research.”
Understanding fertility outcomes for the AYA cancer population is imperative to improving the cancer treatment process and ensuring that fertility preservation discussions become standard procedure in comprehensive cancer care. Fertility preservation is of special concern for AYA cancer patients, a group that historically has been underrepresented in clinical research studies. “So Others May Benefit: Young Cancer Patients and Survivors Take Part in Oncofertility Research,” explores the unique approach that the Oncofertility Consortium used to get their attention and increase AYA participation in clinical studies: social media.
The success of this new outreach effort can be seen in the Consortium’s Fertility Information Research Study (FIRST). FIRST is a fertility information research study for young women who are facing or have faced cancer treatment. Researchers want to learn more about how cancers and treatments affect the reproductive health of young survivors, and whether or not cancer survivors wish to have children in the future or not.
When FIRST was initially launched, researchers had some difficulty recruiting study participants, due to the challenges AYA’s pose to researchers (in other words – they can be hard to track down). After some initial brainstorming, they decided to utilize their relationships with some of the leading AYA advocacy groups such as Stupid Cancer and Imerman Angels to reach the AYA population. After the first posting about the study on Twitter and Facebook, researchers received 15 calls from cancer patients willing to participate. Today, FIRST has 200 participants and counting, many of them learning about the study via social media.
To learn more about how the Oncofertility Consortium is changing the face of comprehensive cancer care through social media, read “So Others May Benefit: Young Cancer Patients and Survivors Take Part in Oncofertility Research.”