Your identification as a risky gene carrier gives you a powerful advantage by providing you with the power to find cancer early or, for many, to drastically reduce the risk of ever developing it.
Each individual risky gene carrier is unique. The type of hereditary cancer and estimated risk of developing it can vary widely , depending on the gene that is affected and the inherited mutation within it, as well as a variety of other factors.
Risky gene carriers who have not yet developed hereditary cancer are referred to as 'previvors.'
Learning one carries risky genes can be overwhelming, especially when you don't have supportive connections from people who understand what you are going through. Many risky gene carriers who are seeking out genetic testing or have recently been identified are the first in their family, so any number of biological relatives may also be affected, adding to the fear and anxiety already present for oneself. For many, a positive genetic test result means they must make difficult choices about how to best proceed and there could be major hurdles to overcome, also made more difficult in isolation. To meet others like yourself, get connected on social media or contact us for more information.
Risky genes are complicated. Each carrier has their own unique journey based on many factors in addition to the specific mutation they carry. Hereditary cancer is still a relatively new condition in research terms, so the information is constantly being updated. It takes time for anecdotal evidence to be noticed, then for research results to be definitive enough to eventually make their way into medical recommendations and then your own doctor. As a result, many sources are out-of-date and medical professionals are not always as up-to-date as one might hope. This makes it important to empower yourself by doing your own homework and connecting with others who have been there.
One of the red flags that one may be a risky gene carrier is an early-age cancer diagnosis. When hereditary cancer does develop, it tends to be more aggressive, has a higher rate of recurrence and an increased chance of developing at another site. As a result, increased and early-age cancer screening is recommended for risky gene carriers who have not yet developed hereditary cancer with the hope that, if it does develop, it will be found early when most treatable. Ask your doctor about screening for the types of hereditary cancer you are susceptible to.
Certain drugs have been found to be useful in lowering hereditary cancer risk. Examples include the birth control pill, which is known to reduce the risk of ovarian cancer in those who take it but it may increase the risk of breast cancer, so may be less desirable for risky gene carriers who still have their breasts. Tamoxifen and other estrogen-reducing drugs have been found to be helpful in reducing breast cancer risk but they cause menopause, so may be less desirable for young carriers. Ask your doctor to describe the potential side-effects for these drugs so you can weigh the pros and cons.
The most effective cancer risk-reduction methods are in the form of surgery to remove breasts and/or ovaries. Fallopian tubes and also recommended for removal in most risky gene carriers and the uterus for some. This may seem extreme from the outside looking in, but for risky gene carriers who face a very high cancer risk, these methods have been found to be up to 95% effective. For male carriers, breast removal may be recommended in rare cases but there is no recommended surgical invervention for prostate cancer.
Lifestyle changes have been well-proven to be effective in reducing cancer risk. So much so, that a health services study suggests up to half of all cancer is preventable through lifestyle choices. For risky gene carriers, who are at a much higher risk of developing cancer than those in the general population, it makes even more sense to ensure optimal health and reduce environmental cancer triggers.
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Disclaimer: This website is for educational and informational purposes only and may not be construed as medical advice, nor is this information intended to replace advice offered by medical professionals.
Risky genes is a genetic condition that can cause any of several types of cancer due to the presence of inherited mutations in any of many different genes. Our old name, The Hereditary Breast and Ovarian Cancer Society, was based on old science that no longer reflects the true scope of this condition.