Forewarned is forearmed: A cancer genetic counsellor's role

Ingrid Ambus can pinpoint the moment her career path became clear. After completing her undergraduate degree in psychology, she landed a role in a hospital's cancer research unit, studying early onset colon cancer in children.

Ingrid Ambus next to a painting by her husband
Cancer Genetic Counsellor Ingrid Ambus next to a painting by her husband of a cell dividing

“I asked who would be the one to tell the children they had tested positive for this cancer gene,” Ingrid remembers. “I was then told not to worry as there was a genetic counsellor who would be there during this difficult time. That's when the light went on. I wanted to be in that role. I wanted to be the one to help and talk to patients.”

Ingrid went on to complete her Masters in Genetics Counselling at the University of Manchester, then worked several years at Sunnybrook Health Sciences Centre before moving to North York General Hospital (NYGH), where she's been a Cancer Genetic Counsellor for the past 14 years. In January 2017 she became NYGH's cancer lead in the Clinical Genetics Program. In the Charlotte and Lewis Steinberg Familial Breast and Ovarian Cancer Clinic, she and her colleagues provide genetic assessment and counselling for individuals and families at increased risk for inherited breast and/or ovarian cancer.

Making a difference in the lives of our patients

“My role both challenges me and excites me,” says Ingrid, who is also the Co-chair for NYGH's Bereavement Support Team, a committee that helps promote bereavement education for hospital staff. “Most importantly, I feel like I am making a difference in the lives of our patients who have cancer or who are at higher risk for developing the disease.”

Cancer is caused by mutations to the DNA in cells, causing them to divide abnormally. While many mutations occur after birth, caused by external forces such as smoking or alcohol, some people are born with inherited genetic mutations. These mutations include those in the BRCA1 and BRCA2 tumour suppressor genes, which account for approximately 5% to 10% of breast and ovarian cancers. 

Genetic testing for hereditary cancers has gained prominence in recent years, in large part due to actress Angelina Jolie coming forward in 2012 about carrying a BRCA1 mutation and undergoing a double mastectomy as a result. 

“Prior to Jolie, many people found the idea of a pre-emptive double mastectomy scary,” Ingrid says. “Now it's far more common. People use their genetic test results as part of their treatment, rather than it being an afterthought once treatment is completed.”

Integrating genetic testing into the health care journey

Along with the greater awareness, genetic testing has become increasingly more sophisticated and there have been more opportunities for integrating cancer genetic testing into the health care journey. The cancer genetics team is now working closely with the Cancer Care Program to help identify patients who may have hereditary cancers and then provide them with timely treatment options. It's this synergy that makes care at North York General truly unique, according to Ingrid. Patients can sometimes even see a cancer genetics counsellor the very day they are diagnosed.

“It's important that we know if the cancer is inherited because it can impact treatment options,” Ingrid explains. “For instance, if we find out that a patient's cancer is the result of a BRCA1 mutation, we could recommend, for example, a full mastectomy rather than the less invasive lumpectomy, where only the tumour and surrounding tissue is removed. This decreases the chance of a new cancer occurring in future. We can also be more vigilant about monitoring for other hereditary cancers that they may be at risk for.”

For those who do test positive, the news can cause an avalanche of follow-up questions. While she acknowledges it can be a shock, Ingrid stresses there is another side to consider. “I always say that being forewarned is being forearmed,” she says. “It's empowering to know if you have a gene mutation as you and your health care professional can work together to be prepared and know what options are out there. You can also encourage family members to get tested and prepared too.”

Supporting patients to make informed decisions

Ingrid is careful to stress that her role is one that provides education, rather than telling patients and families what they should do. “I am supportive of whatever they feel is right for them,” says Ingrid, who also highlights the hospital's important involvement with the Ontario Breast Cancer Screening Program, a province-wide program that provides breast cancer screening for high-risk Ontario women. “Whether it's the decision to undergo more genetic testing or what to do with a positive result, my role is to give patients all the necessary information so they can make an informed decision.”

At the end of the day, Ingrid says it is an incredible privilege to be a Cancer Genetic Counsellor. “Each day brings a new challenge and new opportunity,” she says. “I feel both honoured and humbled to be a part of a patient's health care journey.”

This article appeared in the September 2018 issue of The Pulse. 

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