Hereditary Breast and Ovarian Cancer Support Organization

Hereditary Breast and Ovarian Cancer HBOC Ottawa -launching a support and Information service for women at high risk of developing breast and ovarian cancer

There currently exists a significant gap in our health care system, not only identified by myself, but agreed on by many oncologists and social workers that I have spoken to as well. Recent research developments in the cancer industry have outlined and identified high risk women and men through genetic testing. These gene markers put women and men at a significant higher risk (up 90%) of developing cancer than those of the general population. The majority of cancer occurs by chance. In about 5-10% of cases, the cancer is hereditary and the risks are higher. Individuals with hereditary breast and ovarian cancer are born with a gene change that leads to an increased chance for developing cancer and can be passed down through generations in the family. Many hereditary breast and ovarian cancers are associated with mutations in two genes, known as BRCA1 and BRCA2.

This genetic destiny often creates significant stress on families as they are ultimately faced with various challenging decisions about their future health. The goal of HBOC Ottawa would be to advance the education of the public and the families concerning hereditary breast and ovarian cancer in addition to providing support to those individuals and families affected by providing information, advice and peer support. All people should have timely access to quality health information and services. HBOC would offer the right to choose their own path to well-being and support while respecting the privacy of individuals and their families affected by hereditary breast and ovarian cancer.

I would like to launch a support and information system in Ottawa which would include an interactive website as well as a resources book that would provide education and support to women who are at high risk for breast and ovarian cancer. We would arm women (and their families) with knowledge, options and information with what it means to be genetically prone to breast and ovarian cancer and offer companionship and empathy during their journey. HBOC would empower them to take control of their health and in turn, grant them the freedom and peace of mind to live a beautiful and fulfilling life.

Programs such as, Positive Pals, general Information Sessions about BRCA, Informative and an interactive website , Outreach material for both the medical community and general public, linking resources in other communities. Currently there are no active organizations or current hospital services in Ottawa that provide this kind of support and resource information to women that I have outlined. The demand and need is ever increasing as more women are offered genetic testing as one of the first steps of proactive cancer prevention. The questions also create further demand as the second generation children grow with this knowledge of their parent’s mutation. There needs to be an assurance that their quality of life is not burdened or lowered because of the lack of support available.

The demographics of this population possess significantly different needs than those who already have cancer. Those already affected by cancer have their decisions driven by their doctor and medical team of experts. Women who are identified has high risk are faced with personally difficult decisions with options to prevent cancer, from diet and screening to intense surgeries like prophylactic bilateral mastectomy or a complete hysterectomy. The age demographic of genetically dispositional women are usually below the age of 45 and possible single, or not had their families yet. This adds a whole new level of support at a community level with issues that surround single women who have had reconstructive surgery as well as the heart wrenching decision of having children or not ,because of the fear of possibly passing down the gene

Women who are identified as high risk are more likely to view prophylactic mastectomy and complete hysterectomies as the best way to reduce their risk for cancer and their anxiety about developing the disease, according to a report published online March 9 in Cancer. The decisions to alter physical appearance or affect the ability of having children are obviously not easy processes. The support system that HBOC Ottawa would offer can alleviate some of that stress to both women as well as the family. Ultimately this resource would also connect information not only in the Ottawa area but also link various resources across the country. It is always difficult to face cancer in the face. Let's be part of the change for high risk women and men providing them with answers and support when they are going through possibly the hardest times in their lives.

FINANCIAL BREAK DOWN Outreach Coordinator $45000, Website $4000, Marketing Development $ 8,000, Outreach$4,000 Information session $5000