Hereditary cancer is diagnosed much more often in affected families, at younger ages, is more prone to recurrence and a second primary site and tends to be more aggressive than the same types of spontaneous cancer, making it harder to treat. Risky genes can be passed down to biological children at a rate of 50% and subsequent generations have been shown to develop cancer at earlier ages. Although some types of hereditary cancer may be prevented through drug and surgical intervention, this can cause loss of fertility, negative body image, relational issues and early menopause, often requiring additional treatment. Hereditary cancer is not a one-time event. It is a lifelong condition, whether cancer manifests or not, that reaches far past the person who is affected.
Risky genes are not created equal. The type of hereditary cancer a risky gene carrier is susceptible to varies. It depends on which gene is affected, what type of mutation is found within that gene and a variety of other factors. Unfortunately, due to the historical lack of attention given to this condition, available information and services too often reflect spontaneous cancer recommendations, outdated research or focus only on one cancer type, gene or sex. It is essential that potential and identified risky gene carriers and their medical professionals have access to timely, inclusive information and resources to be able to identify others in the family who may be similarly affected.
Today, 1 in 37 people are estimated to carry risky genes, most of which will develop one or more type of hereditary cancer without intervention, many at a young age. We cannot tackle awareness or any of the barriers to patient identification and care without a drastic increase in funding. Hereditary cancer represents 10-25% of all cancer. However, the larger cancer organizations and governments have not historically funded the various hereditary cancer components proportionately, if at all. If you have risky genes or know someone that does, support your own cause by redirecting your donations to this organization or other hereditary cancer-specific causes. The greatest barrier to drawing support for this cause is the widespread misperception it already exists.
Learning you are a risky gene carrier provides access to early-age cancer screening and, for many, preventative options known to drastically reduce the chance of you ever developing hereditary cancer. For those who have already developed cancer, knowing it is as a result of a risky gene mutation will inform treatment.
For more in-depth information on how risky genes are passed down and hereditary cancer forms, see the UNDERSTANDING RISKY GENES BOOKLET below
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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.
We will be dissolving The Risky Genes Society over the next few months and dispersing all remaining assets as required according to the Alberta Societies Act and Canada Income Tax Act. We wish all those affected by hereditary cancer a future of growing knowledge and awareness of how hereditary cancer can be prevented, detected and treated. All the best in health to those affected with hereditary cancer.
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