There are many things to consider prior to, and after testing. There are also many issues that face the HBOC syndrome population as a whole or a portion thereof. Some of these issues may have an effect on the tough decisions a carrier has to make and when in their journey they will make them.
A confirmed genetic predisposition in the family may affect the ability to purchase certain types of insurance. Ensure life and disability insurance policies are in place before considering genetic testing.
Physicians who specialize in fertility can help hereditary cancer previvors or survivors take control of their reproductive life.
For instance, a women without a partner can freeze her eggs. This requires a course of treatment with fertility drugs, and retrieval of the eggs under anesthesia in a short procedure. Eggs can stay frozen for years, then thawed and fertilized when a woman is ready to have a child. Women with a partner can undergo a similar procedure, only their eggs are fertilized immediately and frozen as embryos.
Contact a fertility clinic in your area for more information on options in the event of a cancer diagnosis or preventative ovary removal.
HBOC syndrome carriers develop cancer at a much higher rate, often at a younger age.
- HBOC syndrome carriers often endure cancer diagnoses in young adulthood so may be dealing with young families and are without disability insurance or other financial resources.
Ensure a financial plan is in place in the event of a cancer diagnosis occur or to carry through during preventative surgery and recovery.
Hereditary cancer, especially when diagnosed at a young age, may tend to be aggressive.
We are only just starting to see targeted hereditary cancer treatment clinical trials. There is no mainstream treatment availability to date, so prevention and early detection are key.
Cumulative Wait Times
The first decision in a prospective HBOC syndrome carrier’s journey is whether to go for genetic testing. Once that decision is made some regions report long wait times for the appointment and several months for test results.
Breast cancer patients are not always being given the option for immediate reconstruction at the time of their mastectomy and may endure a lengthy period without breasts during their wait for delayed reconstruction. Previvors choosing preventative double-mastectomy plus reconstruction may wait even longer. Some are being diagnosed with cancer during the long wait.
It is important to note that to move through the breast reconstruction process may take more than one surgery and recovery time
Other preventative surgeries such as ovary removal may take several months to a year to move through the required appointments to the date of surgery.
By the time an HBOC syndrome carrier has their status confirmed, goes through their decision-making process and moves through screening appointments and preventative surgeries it could be many years.
When deciding when to go for genetic testing or to arrange for preventative surgeries it is important to consider the length of wait times in your region.
Cancer risk-reduction options are drastic, and haven’t changed much in 20 years
Although HBOC Syndrome carriers are thankful to have the options they do for cancer risk-reduction, today’s options are very drastic and can cause additional issues that affect the rest of their lives. Little progress has been made in the years since the first HBOC syndrome mutation was discovered. If we want to see less invasive prevention options for our children and their children, we must band together to do something now.
Research funds are needed to find less invasive ways of preventing cancer in HBOC syndrome carriers.
Hereditary breast, ovarian and prostate cancer affects at least 3-5 times more people than does multiple sclerosis, and that number is growing. Some statistics report 80% of HBOC syndrome carriers have not yet been found.
Hereditary cancer is not well known or represented. Please help us search out and save the lives of others similarly affected by sharing information with your medical professional and others, and getting otherwise involved in your cause.
Lack of Resources
Despite having the most need, funding for the hereditary component of breast, ovarian, prostate and the other cancers that HBOC syndrome carriers are susceptible to has been minimal or in some cases non-existent. It is important that carriers themselves turn their funding inwards.
Spread awareness by sharing information with your friends, family and colleagues by word of mouth or on social media.
The only way to ensure your donations go towards hereditary cancer is to donate to an organization dedicated to hereditary cancer.
The only organizations in Canada specifically dedicated to HBOC syndrome are:
The HBOC Society, based out of Alberta, they represent, educate and support individuals, families and communities affected by HBOC syndrome across the nation and beyond.
Risky Genes is an offshoot of the HBOC Society specifically designed to encourage connection and to entice young HBOC syndrome carriers to make a difference for themselves and their future.
Familial Breast Cancer Research Unit, Toronto Women’s Hospital: World leaders in the study of inherited cancers.
HBOC syndrome carriers need to be seen and heard.
When donating to or attending a run or event for other organizations, make sure to ask where your funding will be directed. This will help put pressure on those organizations to step up in support of their hereditary component.
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