Submitted by Genetic Support Foundation
For those who have received a positive result after genetic testing for pathogenic variants that significantly increase cancer risk, a new resource is available for connecting with others who are in a similar situation.
“Positive Results” is a new Facebook group for support and resources around hereditary cancer risk. The group was formed by Genetic Support Foundation (GSF) to help connect the hereditary cancer community in a welcoming, digital environment. The group is administered by professionals and patients connected to GSF and aims to provide expert educational materials and to host meaningful discussions around all facets of hereditary cancer. The forum is open to those with positive results, caregivers and loved ones of those with positive results, and those in the medical community who are familiar with the unique needs of someone with hereditary cancer risk. It is not intended to replace any medical care or advice.
“When patients receive a positive result for hereditary cancer risk, we often point them to external resources for support. While these resources are well-known and respected, we found that many patients want to connect with others who are going through a similar experience,” explains Katie Stoll, executive director of GSF. “With this new forum, we can offer people accurate information in a safe and welcoming space with support that goes beyond the counseling appointment.”
Inherited pathogenic genetic variants, sometimes called mutations, play a major role in about 5 to 10 percent of all cancers. Better-known pathogenic gene variants include BRCA1 and BRCA2, which increases risk of breast and ovarian cancers, among others. But with mutations in specific genes being linked to more than 50 hereditary cancer syndromes, the hope is that all those affected will feel welcome to join the group.
“Carrying the knowledge of being predisposed to cancer can be a burden, or it can be empowering, and often it’s both,” says Nikki McCoy, who will help as an admin on the page, and who is positive for a BRCA1 gene variant. “We hope that members feel empowered after visiting the group and that they feel supported and not alone. Community-building can be extremely healing and helpful.”
The group is also welcoming of those who may not have had genetic testing but have a strong family history of cancer.
Women and men both have a 50 percent chance to inherit and pass down pathogenic variants. Almost all people who have a pathogenic variant will have a parent who also carries it. Many people who have a pathogenic variant and develop cancer do so at younger ages than the general population.
For more information, visit the Facebook group.