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.
At any stage of a previvor’s journey the road is difficult, especially for young previvors who have not yet had their children or are in a committed relationship. A typical previvor journey includes several or all of the following:
■ a childhood fraught with the loss of loved ones to cancer
■ a realization that cancer could also happen to you
■ the decision to go for genetic testing and the lengthy wait for the results
■ confirmation of a genetic mutation or a family history worthy of you being deemed an HBOC syndrome carrier
■ constant fear that you or a loved one will be next
■ adulthood with more loss of loved ones to cancer
■ increased screening starting at the age of 25 for breast and ovarian cancer which includes a variety of tests, some invasive
■ chemoprevention drugs that reduce estrogen, thus causing chemical menopause
■ all of the fear, appointments, tests and surgeries associated with preventative-double-mastectomy and in some cases, to remedy complications
■ all of the fear, appointments, tests and surgeries associated with breast reconstruction
■ all of the fear, appointments, tests and surgeries associated with preventative salpingo-oopherectomy (fallopian tubes and ovaries) and in some cases, to remedy complications
■ surgical or chemical menopause and the resulting side-effects that usually include hot flashes, mood swings, cognitive issues, and long-term side-effects that may include bone loss and heart health
■ body image issues, loss of feeling and reduction of sexual function
■ loss of fertility
■ relationship issues
This list could go on and on but the point is made, and is backed up with research, that being an HBOC syndrome previvor can be as traumatic as being diagnosed with cancer. Previvors not only carry a huge burden regarding their physical health and fear for biological family, but a general lack of awareness and education often results in a lack of emotional support from the community surrounding them, sometimes even including their own friends and loved ones.
Cancer previvors are individuals who have a predisposition to cancer but who haven’t yet had the disease. This group includes people who carry a proven inherited mutation, have a family history of cancer that defines them as high risk, or have another predisposing factor. The term specifically applies to the portion of our community that has its own unique needs and concerns separate from the general population, but is different from those already diagnosed with cancer.
Young previvors face many additional challenges as compared to older previvors who have already had their families. The HBOC Society has a program called “Risky Genes” that is specifically geared towards the unique needs of young previvors and survivors who prefer to do something to make a difference for their future and that of subsequent generations.
And, when you are ready we could use your help to create a world with better prevention options. The first step is to add your voice to the cause. When you are ready to get more involved, we can connect you.
You are a Previvor
■ Gain personal power through knowledge
■ Share their knowledge
■ Be their own best advocate
■ Ask for help when they need it
■ Get to know others like them
■ Get involved in their own cause
We are here to help you with support and information.