If you have a question, please contact us.
I thought this condition was only about breast cancer. Why is it called the breast cancer gene?
The term 'breast cancer gene' is not a good representation of the condition. People with an inherited predisposition to breast cancer do not inherit a different gene than others. Rather, every person has certain genes that control cell division in areas in the body that include the breast, and various mutations within those genes elevate cancer risk for breast, and other types of cancer. BRCA1 and BRCA2 are the most common genes, that if mutated, elevate cancer risk. But, they are far from the only ones. The proper term for the condition is HBOC syndrome, which is increasingly being referred to as having 'risky genes' to be more inclusive to men, and because there are now many genes that fall under the HBOC syndrome umbrella and the number will continue to grow.
I heard that hereditary cancer is being diagnosed at younger ages. Is that true?
There is some targeted research that supports that subsequent generations are being diagnosed an average of close to 8 years younger than previous generations.
Is hereditary cancer different than spontaneous cancer?
Yes. It is much more dangerous. The gene mutations that cause hereditary cancer reduce one's ability to fend off or fight cancer so it is diagnosed more often and at younger ages in affected families. Hereditary cancer has a higher rate of recurrence or a second primary cancer and tends to be more aggressive, often making it harder to treat. The gene mutations that cause hereditary cancer can be passed down to children.
I carry risky genes. When should I start cancer screening?
The recommended age for early cancer screening may vary, depending on the region, but for the most part it is at 25 years of age. In addition, this may be dependent on a variety of other factors including family history.
Frequently Asked Questions
Can men be diagnosed with breast cancer?
Yes, men in the general population can be diagnosed with breast cancer. Men who carry an inherited gene mutation for HBOC syndrome have a higher risk of being diagnosed with breast cancer than the general population, but the odds are still quite low. Your genetics professional will be able to assess a male carrier's risk of breast cancer, based on the particular mutation carried and a variety of other factors.
Why are the wait times so long to get into some of the high risk clinics?
These clinics are often restricted by the amount of government funding available to them which affects the level of staff and other resources. Some are still 100% privately funded.
I don't want to see my kids have to remove their body parts to be safe. Is anyone doing anything to find a cure?
Yes. The HBOC Society is closely aligned with HeritX, the first organization in the world whose sole purpose is to find non-surgical ways to prevent hereditary cancer.
Do I have to pay for genetic testing, screening or preventative surgeries?
If you live in Canada, for the most part no. However, if you do not fit the criteria for government-insured genetic testing you will have to pay for that service elsewhere. In some regions, specialized services such as aerola tattooing may not be covered.