Spotlight on hereditary breast and ovarian cancer

Media release, Gift of Knowledge, August 2010

First ever spotlight on hereditary breast and ovarian cancer in New Zealand

New Zealand’s first conference dedicated to hereditary breast and ovarian cancer aims to answer a growing thirst for knowledge on this emotional and life or death issue.

The October conference, ‘Opening Doors – Hereditary Breast and Ovarian Cancer, the New Zealand Perspective’, has developed from The Gift of Knowledge, a group created to provide information and support to people who are impacted by a genetic pre-disposition to cancer.

Gift of Knowledge Founder and conference organiser Nicola Coom says awareness in New Zealand of issues around BRCA1 and BRCA2 – the genetic mutations that increase a person’s risk of developing breast and ovarian cancer - is on the rise.

“We have our own unique culture here in New Zealand and that impacts how we manage genetic cancers. As with any hereditary disease, hereditary breast and ovarian cancer brings with it a host of medical decisions and personal dilemmas for people and their families - some choose surveillance while others choose to remove breasts and ovaries. We are overdue in New Zealand for a conference that delves into the New Zealand approach to such issues.”

Medical practitioners and the public will come together at the two-day event to share experiences, increase their understanding, learn about advancements in the field, and have questions answered.

The conference boasts an impressive speaking line-up of leaders in the fields of genetics, reconstructive surgery, gynaecological oncology, fertility, diet and the psychological impact, to name a few.

Attendees will have the opportunity to learn more about the latest information on breast and ovarian surveillance, genetic testing, risk reducing options, management of surgical menopause, breast reconstruction options, and understanding family history.

“Whether you are BRCA positive, someone with a strong family history, a cancer fighter, considering being tested, a supporter, family member or a health care provider, this conference has something for you,” Nicola says.

“Navigating the maze of issues and options around hereditary ovarian and breast cancer is a reality for many New Zealanders, and raising awareness, educating and connecting is key to informing and supporting for decisions that ultimately save lives.”

Opening Doors – Hereditary Breast and Ovarian Cancer, the New Zealand Perspective will be held on October 1,2 at the Latimer Conference Centre, Christchurch.

www.giftofknowledge.co.nz

ENDS

Background

Genetic breast and ovarian cancer

All cancer is genetic, caused by changes in genes, but in most people, these changes have occurred sporadically by chance or with age. However, some people have developed cancer, or are at high-risk of certain cancers, because of a genetic susceptibility they have inherited.

What are BRCA1 and BRCA2?

• Hereditary breast and ovarian cancer is often caused by mutations in two genes called BRCA1 and BRCA2. These genes were discovered in 1994-1995 (the acronym BRCA comes from BReast CAncer one or BReast CAncer two).

• Normally these genes act like brakes that help stop abnormal cell growth in the breasts and ovaries. However errors (called mutations) can occur in these BRCA genes, and if a woman has inherited a mutation in one of these genes she has a high chance of developing breast and/or ovarian cancer.

• Women who carry a mutation in one of these genes may have a 50-85% lifetime risk of developing breast cancer and a 20-40% lifetime risk of developing ovarian cancer.

• A man who carries a BRCA mutation has a 1-7% lifetime risk of breast cancer, and his risk of prostate cancer is increased at least two-fold compared to other men, especially up to age 65-70 years.

• About 1 in every 800 people in our population carries a mutation in BRCA1 or BRCA2, and less than 5% of all breast and ovarian cancers can be explained by a BRCA mutation.

• A family history of breast and/or ovarian cancer is an important risk factor for the disease. A family history means having one or more blood relatives on the same side of the family diagnosed with breast and or ovarian cancer (sister, daughter, mother, grandmother, cousin, aunt, and rarely a brother, uncle or grandfather). These relatives could be on the mother’s or father’s side of the family as BRCA gene mutations are inherited equally by males and females.

• A parent with a BRCA1 or BRCA2 mutation has a 1 in 2 chance (50%, like “heads or tails”), of passing it onto each child they have. There is also a 50% chance for each child to inherit a normal BRCA gene from their parent who carries a BRCA mutation if the normal gene is inherited.

• Options for a person who has a positive test result for carrying a BRCA mutation include risk reducing surgery, such as prophylactic surgery removing breasts and the ovaries (removing as much of the ‘at risk’ tissue as possible in order to significantly reduce the chance of developing cancer) along with a range of surveillance methods.

Gift of Knowledge

The Gift of Knowledge was created to provide information and support to New Zealanders who are impacted by a genetic pre disposition to cancer, and ultimately reduce the risk of genetic breast and ovarian and cancer.

Founder Nicola Coom named the group after trying to describe how she felt about testing BRCA positive. “Having this knowledge is a gift. Had I not been given this information I would not have the choices I have today,” she says.

The Gift of Knowledge aims to:

- Ensure that there is somewhere in New Zealand where people with a genetic pre disposition for breast and ovarian cancer (BRCA) can go for relevant support and information

- Provide support and information to help people work through their options

- Raise the awareness of hereditary breast and ovarian cancer

- Represent the concerns and interests of its high risk community

www.giftofknowledge.co.nz