Many of you may already know about the widely popular organization, Stupid Cancer, but for those of you who are new to our blog, Stupid Cancer is the nation’s largest support community for young adult survivors of cancer. They support a global network of survivors, caregivers, providers and advocates to ensure that no young adult is unaware of the age-appropriate resources available to them. Stupid Cancer empowers young adults affected by cancer through innovative and award-winning programs and services, including Stupid Cancer Happy Hours, the Stupid Cancer Show, and the annual OMG! Cancer Summit for Young Adults.

The annual OMG! Cancer Summit for Young Adults is the premier oncology conference and social networking event for the young adult cancer movement. A pivotal healthcare event, OMG! is one of the largest gatherings of young adult patients, survivors, caregivers, professionals and advocates in the world. The event inspires thousands to get organized, build community and unite as one to drive change. In April, Stupid Cancer hosted its sixth OMG! Cancer Summit in Las Vegas, NV, and attracted over 600 attendees. As one would expect, Stupid Cancer makes the weekend-long event not only informative but also FUN, with events such as an ice cream social, and Stupid Cancer pub trivia.

Over the last few years, members of the Oncofertility Consortium have attended OMG! to help young survivors understand their fertility options and provide resources and pertinent information to young adults whose fertility may have been affected by their cancer treatment. This year, Consortium member, Laxmi Kondapalli, MD, MSCE, moderated two breakout sessions entitled, “Fertility: Rights & Options With, Through, And Beyond Care.” Dr. Kondapalli served as the clinical expert and reproductive health specialist alongside Alice Crisci, advocate and Founder of Fertile Action, and Jennifer Rockman, ovarian cancer survivor.

The framework of their session revolved around all the different routes to parenthood available to young cancer survivors, including banking eggs, embryos, ovarian tissue, and semen; using a gestational carrier; and pursuing adoption. Dr. Kondapalli stated that the overwhelming theme that evolved from the sessions was the lack of information presented to newly diagnosed cancer patients regarding the potential impact on their fertility. Attendees were eager to learn about the different tests available to gauge fertility, such as ovarian reserve testing for women and semen analysis for men. They also wanted to learn more about their fertility options following cancer treatment and, specifically, how their treatment may have impacted their fertility. Participants left armed with information and resources, and even Dr. Kondapalli’s personal email address, should they need her clinical expertise at any point in their fertility journey.

To learn more about your fertility options, visit SaveMyFertility.org, or contact us at 1.866.708.FERT (3378).

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.”