HBOC syndrome = hereditary breast and ovarian cancer syndrome.
HBOC syndrome is not just about breast and ovarian cancer. It also causes high rates of prostate cancer, and slightly higher rates of some other types of cancer, depending on the genetic mutation one carries.
Hereditary cancer IS different from spontaneous cancer. It is diagnosed much more often in affected families, at younger ages and tends to be more aggressive.
HBOC syndrome is more common than most people think. Several times more people are affected by HBOC syndrome than multiple sclerosis, which translates to up to 1/2 million Canadians.
Most people that have HBOC syndrome still don’t know it. Up to 80% of carriers are estimated to be unaware of their status, so can do nothing to save their lives.
There is no such thing as ‘the breast cancer gene’. Hereditary breast cancer is caused by mutations in one or more genes that all of us carry in every cell in our body. Within those genes, hundreds of different mutations are possible.
HBOC syndrome is not just about BRCA gene mutations. BRCA mutations explain less than 1/2 of hereditary breast cancer and less than 1/3 of herditary ovarian cancer. Many new mutations have been discovered, and will continue to be discovered that also cause hereditary and ovarian cancer, and the related cancers.
Not everyone with HBOC syndrome has the same risk of cancer. Depending on the gene affected, and the mutation within it, cancer risk varies. Unfortunately, there is not enough research available yet to stratify cancer risk.
Cancer risk can fall below or above reported average risks. For example, if average risk for a BRCA1 gene mutation for breast cancer is reported to be between 40 – 88%, other factors such as environment, lifestyle and number of first-degree relative cancer diagnoses could put personal risk to 95%.
Not everyone carrying an HBOC syndrome mutation will be diagnosed with cancer. However, there is no way to know if you will be one of the lucky ones.
Hereditary cancer is underfunded.
Wait times for government-paid genetic testing and preventative surgeries are sometimes very long.
Targeted services are limited and fragmented.
Without intervention the situation will only get worse.
- Research reports cancer rates will double by 2030
- Research has shown HBOC syndrome cancer is diagnosed earlier each new generation.
- Research has shown North American HBOC syndrome carriers are being with cancer at a higher rate than a similar population in Poland, possibly due to lifestyle differences.
- New mutations and cancers affecting HBOC syndrome carriers are being found at an increasing rate.
- Researchers anticipate the portion of cancer that is hereditary will continue to grow.