Meet Belfast Women to Help People Affected by Hereditary Breast Cancer

Belfast teachers have brought together a community of people at high risk for hereditary breast cancer.

Hazel Carson, 47, launched BRCA Link NI in 2009 to support people around the world. Northern Ireland People who have been tested positive for BRCA mutations. Due to hereditary status, people are at a much higher risk of developing breast cancer, sometimes up to 70% or more.

Hazel was urged to create a new support community after testing that one mutation, BRCA1, was positive at the age of 29.

“I was scared alone. I searched the internet for something related to BRCA,” Hazel said.

“I kept thinking that I would find a group of people who would support me. I wasn’t on a social networking site, so I was completely lost in all the research articles online. My age. I believed that no one actually had this gene in Northern Ireland. “

For women like Hazel who have BRCA mutations, there are multiple options available.

Stuart Macintosh, Consultant Breast Surgeon Belfast Municipal Hospital Some options include annual screening or risk-reducing surgery as part of the NHS High-Risk Breast Screening Program. This means that women with BRCA mutations can choose to have both breasts removed to reduce their risk of developing breast cancer.

Women with BRCA mutations are also at increased risk of developing ovarian cancer and should also be offered a risk of reducing ovarian removal.

“This is generally not done until you are over 40, due to the obvious problems of childbirth and premature menopause,” said McIntosh.

Hazel chose complete risk-reducing surgery in 2009, but felt that he was not given enough information about other risks.

She states: “I needed an explanation because many problems were bothering me. I was worried about the image of my body. I was worried about relationships with others. I was my children I was worried about that, how can I tell the children? “

Hazel, who was awarded this year’s MBE for services to people at genetic risk of cancer after contacting another BRCA carrier through the Northern Ireland Regional Genetics Service, will receive more of the support it once reached. I decided that it should be. for.

BRCA Link NI currently hosts regular events throughout the year, including an annual meeting with researchers at Queen’s University Belfast and Action Cancer Center for Cancer Research and Cell Biology (CCRCB).

This group organizes BRCA carriers through Facebook’s private group. Members can ask for advice, share their experiences, and ask them to meet for a coffee.

“We all support each other. We don’t run a group alone, but a large network of men and women reaching out to provide guidance and encouragement,” Hazel said. Added.

The group is also supported by a network of advisors (researchers, consultants, surgeons) who provide support by speaking at annual conferences.

Much of the group’s support is now moving online, but Hazel hopes that Northern Ireland will become more aware of this condition and will provide more coordinated support for BRCA carriers within the healthcare system. ..

After receiving almost or mixed messages as a BRCA patient, Hazel says no one else should “get lost in our medical system.”

“All BRCA men and women living in Northern Ireland need to be able to provide support from a hospital-based BRCA clinic and have access to the best care channels,” she said.

According to Hazel, only one hospital, Belfast Municipal Hospital, has set up a consultant-led BRCA clinic for patients in the community, but it requires guidance from a “participating” team of experts.

“Patients can receive Gold Star treatment if five trusts come together and take an interdisciplinary approach within one clinic,” Hazel said.

She added: “Even breast cancer patients who are also BRCA-positive need a plan coordinated to cover this area of ​​BRCA.”

Approximately 1,500 women are diagnosed with breast cancer each year in Northern Ireland, and genetic testing is essential for early detection and treatment of family members and those at high risk of developing breast cancer.

“We don’t test people who aren’t affected, that is, women who don’t have or don’t have breast cancer. Unless someone in the breast cancer family has already been tested and knows what we’re looking for. Because it’s not very beneficial, “said McIntosh.

“If possible, we recommend testing the affected relatives first.”

Hazel added: “Knowledge is power. In Northern Ireland, our BRCA carriers make informed decisions about our health and share our experiences with others for a longer and healthier life. We hope we can help you make the choices you make. “

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