Objectives Ovarian granulosa cell tumor is a rare malignancy accounting for <5% of ovarian cancers and are most commonly found in young adults. Due to its rarity, many institutions have a low number of patients to query or survey. By using social media, many specific populations can easily be accessed and surveyed.

Methods Women 18 and older who are members of the Granulosa Cell Tumour Research Foundation Facebook group were given the opportunity to take the Granulosa Cell Quality of Life Assessment Survey. The survey was completely anonymous, and participants had the opportunity to respond to questions regarding their disease and their quality of life after treatment using the FACT-O (version4).

Results A total of 160 woman 18 or older participated in the survey. Only 28 participants desired pregnancy at time of diagnosis and of those participants only 7 sought a reproduction endocrinologist regarding future fertility prior to surgery or chemotherapy. Regarding the quality of life assessment 46% of participants report that after treatment they were not satisfied with their sex life and 33% not being interested in sex at all.

Conclusions Using social media provides a window to reach many populations throughout the world with unique diagnoses. Using this technique of surveying patient’s provided important subjective data that can be used to improve patient’s quality of life after treatment. The survey identified the needs of Granulosa Cell Tumor patients as fertility counseling prior to treatment and attention to their sexual health after treatment.