Since its discovery in 1995, this type of hereditary cancer has changed from one type of cancer, caused by mutations in only one gene to several types of cancer, caused by mutations in any of many different genes. As a result, all labels used to describe this syndrome, such as ''breast cancer gene'', ''BRCA'', ''hereditary breast and ovarian cancer'' and ''HBOC'' tell only part of the story, leaving out well over half of those who are affected. To better serve our patient group, we are in the process of changing our name and updating all resources to reflect the fully inclusive and future forward RISKY GENES™ brand. We ask for your patience during this process.
Learning one carries RISKYGENES is traumatic. Those affected live in constant fear for themselves and loved ones. It's hard to make the decision to test for RISKYGENES and it even harder to make the difficult choices required in the case of a positive test result, especially without supportive connections. We provide connection and information for prospective risky gene carriers, previvors and survivors.
WHO IS AFFECTED?
At least 1.3 million Canadians do, but more than 90% don't know it yet
This type of hereditary cancer has gone by many labels including, ''hereditary breast and ovarian cancer syndrome'' and is caused by the presence of inherited gene mutations that cause the carrier to have a higher risk of breast and ovarian cancer than those in the general population, often much higher. People who carry these mutations may also have an increased risk of some other types of cancer, including prostate, pancreatic and melanoma, so we prefer the more inclusive label, RISKY GENES.
About 10% of all breast and prostate cancer and at least 15% of all ovarian cancer is known to be hereditary. Not all RISKY GENE carriers will develop cancer, and some will develop one of the related types of cancer. Taking this into account, over 1.3 million Canadians are estimated to carry RISKY GENES.
Unfortunately, most don't know they are affected, denying them access to life-saving screening and treatments.
WHAT ARE RISKY GENES?
Since 2002, the HBOC Society has devoted its energy to passionately serving those directly and indirectly affected by RISKYGENES™
Our vision is that all risky gene carriers have access to quality health care and services