The Irish pharmaceutical giant Allergan agreed to recall more than 30 styles of its Biocell brand textured breast implants and tissue expanders after federal health officials linked the devices to a vast majority of cases of the disease.

But now, despite the recall, women are having difficulty receiving a proper diagnosis, leaving them scared, anxious, and potentially at risk of developing advanced stage cancer — an issue experts say is due to a lack of knowledge of the rare disease within the medical community. As a result, women have become their own advocates, sharing stories in private Facebook groups and helping others get answers.