Be You Bravely: Susanah’s Story and the Courage to Be
What is the bravest thing you have ever done? One of the blogs I enjoy reading is from MOPS International (Mothers of Preschoolers). They are currently running a series on the theme of bravery and courage. ‘Be You Bravely’ is about capturing the stories of people who are living bravely. Bravery comes in many different colours, shapes and flavours. And this week I talked to my lovely friend Susanah about one of the bravest decisions that she’s ever had to make. You see, Susanah is in her mid thirties. And when she was 27 years old, she tested positive for the BRCA1 gene. In a nutshell, the BRCA gene was discovered in the 1960’s, and has been found to be the gene responsible for genetic breast and ovarian cancer. Most breast and ovarian cancers are not genetically linked, in fact less than 5% of all breast or ovarian cancers are attributable to a BRCA mutation. However, if a woman carries the BRCA gene mutation, (about 1 in every 400 people in our population carries a mutation in BRCA1 or BRCA2), she has a sixty percent chance of developing breast or ovarian cancer.
Susanah sadly lost her mother to ovarian cancer in 2008. Her mother was only 50. For Susanah, whose family has a significant history of breast cancer. the hardest part of the whole process was losing her mother. ‘For me, the decision was easy.’ So in 2010 at the age of 32 this mother of one decided to have a prophylactic bilateral mastectomy, a procedure that removes both healthy breasts and lymph nodes, to reduce the risk of breast cancer. She had a reconstruction at the same time.
For any woman with the BRCA1 gene, this is not an easy decision to come to. Considering whether to have genetic testing is in itself, a difficult decision to make. At the time Susanah had one child and was not planning to have any more. After she had the procedure she became pregnant with her second daughter, who is now two. She says that breastfeeding was obviously not an option as she had already had a double prophylactic mastectomy. When her daughter was one, she completed the second part of the process to reduce her chances of developing cancer. She had a prophylactic salpingo oophorectomy, a procedure to remove the ovaries to reduce the risk of ovarian cancer. This was a difficult decision to come to as it meant not being able to have more children, and facing the challenges that come with an early menopause.
Susanah is involved with the organisation ‘The Gift of Knowledge’. If you haven’t heard of this organisation, The Gift of Knowledge is a registered charity, and was founded in New Zealand in 2009. (www.giftofknowledge.co.nz). The Gift of Knowledge is focused on raising awareness of genetic breast and ovarian cancers, connecting those with the genetic disposition to others, supporting them to make informed decisions, providing advocacy, and contributing to reducing the incidence of hereditary breast and ovarian cancer.
Several weeks back I saw the recently released film ‘Decoding Annie Parker’. It was a sad yet inspiring film about a woman in the 1960’s who as a young child loses her mother to breast cancer. As a teenager she loses her sister to breast cancer, and then discovers that she has breast cancer herself. After going into remission from breast cancer she then fights ovarian cancer. She asks herself the question whether all the heartache that her family has experienced is a conicidence, or whether there is a genetic link. Anne Parker is a resilient woman who has survived cancer three times, and is still alive today. In parallel runs the story of the famous geneticist Mary Claire King, who eventually ‘cracks the code’ and discovers the gene for breast and ovarian cancer, in the 1980’s.
The Gift of Knowledge considers ‘having the information a gift, not a life sentence’. Susanah is happy with the decision that she made, and she now has the same risk for breast or ovarian cancer as I would have, or that anyone else of her age would have. We are fortunate to live in an era where we can take preventative steps to reduce our risk of cancer if we choose to, even if some of those steps such as the ones that Susanah has taken are very significant and far reaching. But she says that she made this decision for the benefit of her family. Whereas others with the BRCA1 gene may not come to the same decision so easily, there is no right or wrong. Whether a woman decides to have the genetic testing or not, or whether she decides to have prophylactic treatment, making the decision that is right for oneself and one’s family takes bravery and courage.
It’s been said that courage births courage. There is bravery to live more fully. More authentically. Bravery to have genetic testing. Courage to wait for results, and to have risk reducing surgery or to forgo surgery and opt for monitoring. Bravery to face one’s fears, and to give up and grieve for a part of one’s femininity. There is courage to be strong for the next generation. And courage to follow our own hearts, making the right informed decision for ourselves and our families.