Inside the nucleus of every cell of our body are pairs of chromosomes made up of genes. Genes are coded messages that tell cells how to operate. All cancer occurs as a result of multiple gene mutations that build up over a lifetime. In the case of risky gene carriers, there was already a certain type of mutation present in one or more of the genes responsible for tumor suppression in some parts of their body before they were born. As a result, they have a reduced ability to ward off or fight certain types of cancer.
Hereditary cancer reaches far past the individual to biological family members, who may be similarly affected. Hereditary cancer develops at younger ages than spontaneous cancer, has a higher rate of recurrence or a second primary site and is more aggressive, making it harder to treat. Risky gene carriers often develop cancer as early as in their 20's and 30's, in the prime of their lives. Risky genes are passed down at a rate of 50% to children, who have been shown to develop cancer earlier than in previous generations.
When first discovered 25 years ago, researchers knew only about one type of hereditary cancer, caused by mutations in only one gene. Soon after, a second type of cancer and another gene was discovered and it stayed like this for many years. More recently, new cancer types and more genes were discovered. As a result, there are many outdated labels still used that leave out large portions of those affected. These include, ''the breast cancer gene'', ''BRCA'', ''hereditary breast and ovarian cancer syndrome'' and "HBOC".
Risky genes can be carried by both women and men; men can develop hereditary cancer and both women and men pass down their risky genes to biological children at a rate of 50%. Depending on the mutation carried, men have up to a 40% chance of developing hereditary prostate cancer and are at risk to develop hereditary breast cancer, although a much lower rate than in female carriers. Men may also be at higher risk to develop some other types of hereditary cancer, such as pancreatic and skin.
About 10% of all breast and prostate cancer is estimated to be hereditary and at least 15% of all ovarian cancer. Not all risky gene carriers will develop those types of hereditary cancer and some will develop one or more of the related cancer types. Taking all types of cancer and genes into consideration, more than 1.3 million Canadians are estimated to carry risky genes. Unfortunately, at least 90% are not yet aware, so do not have the opportunity to make life-saving decisions for themselves or to warn family members.
There is no doubt that learning one is a risky gene carrier is scary. But that knowledge also creates an incredible opportunity the general population does not have to find cancer very early or avoid a cancer diagnosis entirely. Medical recommendations are in place to provide for early-age cancer screening and for many, cancer risk reduction options proven to be highly effective. For those already diagnosed with hereditary cancer, knowing one is a carrier may provide access to new, specialized hereditary cancer treatments. .
While it is true that risky genes may be found in anyone, they are more likely in persons with a certain family cancer history or ethnic background. Government-insured genetic testing services are free for those who fulfill certain criteria but anyone can obtain genetic testing through affordable on-line services. However, these services are many and varied, so it is important the service chosen tests for all risky genes discovered to date and includes professional genetic counselling.
Risky genes are complicated and the issues far-reaching. There are so many questions at every point of a risky gene carrier's journey. It takes a lot of work to pull together essential information to aid in tough decisions as a prospective or confirmed risky gene carrier. Available information is fragmented by cancer type and gene, so may not inform about the related types of cancer or all genes involved. and the medical community is often ill-equipped to recognize or treat carriers. We can connect the dots. Learn more
The public, medical community and even carriers themselves remain largely unaware or misinformed when it comes to the true danger and prevalence of this type of hereditary cancer. When the people around prospective or confirmed risky gene carriers don't understand the tough decisions carrier's face, it can be extremely isolating. So much so that without supportive connections, risky gene carriers may forego or put off decisions that could save their lives. We provide one-to-one support and peer connections. Learn more
NOTE: This type of hereditary cancer has changed considerably since discovery, 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. We are in the process of changing our organization name and resources to reflect the fully inclusive RISKY GENES™ brand, so please be understanding when you are directed to the old HBOC (hereditary breast and ovarian cancer) website through some of the links found here.
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