NOTE: 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.
Put insurance policies in place BEFORE genetic testing It is advisable to put life and disability policies in place, or check existing policies to ensure there are no barriers to obtaining coverage.
Cautions regarding internet genetic testing services It is important to know that government-insured genetic testing is no longer the only option. Today, there are many services available that claim to test for HBOC syndrome gene mutations, but all tests are not created equal. Learn more here or contact us for more information.
What is good for the goose is not always good for the gander Many of the health recommendations regarding breast, ovarian and prostate cancer are based on general population research. Of the little targeted hereditary cancer research that does exist,key findings reveal life-saving differences between recommendations for the general population and for risky gene carriers. A glaring example is pregnancy; general population research supports pregnancy as a protective factor, while hereditary cancer researchers have found evidence that pregnancy is a cancer risk factor for carriers. It is important that you choose a medical professional who is well-educated in HBOC syndrome to ensure the best possible care and learn how to become your own best advocate.
Unsupportive family and friends The first time many people heard of hereditary cancer was through Angelina Jolie's preventative double-mastectomy and later ovary removal. Others first heard through Melissa Ethridge's breast cancer diagnosis and attack regarding Angelina's choices. Both women dealt with their health issues very differently and that, combined with a general lack of public knowledge about hereditary cancer, created much controversy and many uneducated opinions on the matter. Families and friends may not always be understanding of the tough choices that carriers make. It may be helpful to connect with others who are in the same situation to reduce the isolation and find the support needed.
Limited access to specialized services Know that wait times to get into a high risk clinic or other specialized service may be lengthy, due to the lack of funding for those services. This does not mean a prospective or confirmed carrier must wait for genetic testing, screening or to get things rolling for preventative surgery. There are now affordable genetic services available that your doctor to can order online. You can also ask your family doctor to facilitate any screening and specialist appointments.
Fear This is the greatest enemy for prospective and confirmed carriers, but ignoring a situation won't make it go away. Get help, get connected, get healthy!