What are previvors?
Cancer previvors are individuals who are survivors of a predisposition to cancer but who haven’t had the disease. This group includes people who carry a hereditary mutation, a family history of cancer, or some other 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.
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 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; and/or
This list could go on and on but the point is made, and is backed up with research, that being an HBOC syndrome previvor is often 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 and public understanding.
How can previvors help themselves?
- 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.
We are here to help you, but we also need your help to create a world with better options for those directly affected by HBOC Syndrome. The first step is to add your voice to the cause. When you are ready to get more involved, please contact us.
Young previvors face many additional challenges that include relational, sexual and fertility issues. The HBOC Society is on the verge of launching a new awareness program called “Risky Genes” that is specifically geared towards the unique needs of young previvors and survivors who prefer to ‘do’ to make a difference for their future and that of subsequent generations. The program is expected to be rolled out in July 2015.
Watch this website for more information.