Angelina Jolie, Christina Applegate, Sharon Osbourn and I have in common that we all have the BRCA high-risk cancer gene. The American comedy-drama television series The Bold Type features Jane Sloan, a young woman in her 20s that is finding out about and coming to terms with her genetic heritage, undergoing a mastectomy and processing the emotions of alienation and acceptance of her new body. While Jane Sloan is a fictive character, her experience is real for countless women across the globe, including me.
10 years ago, I was sitting alone in a half empty flat, finishing off packing up my belongings after my ex-wife had taken hers. We agreed that she would take the surround system and I would get the designer sofa, but l was still indecisive, and torn between sadness about leaving and excitement of where I was going, While stacking books into a moving box, a card fell out.
Female breast cancer is the most commonly diagnosed cancer (EU fig.). Around 12.5% of women will develop breast cancer in their lifetime. Among women with genetic predisposition the figure is higher: 60-90% with a BRCA1 mutation and 45–85% with a BRCA2 mutation will develop breast cancer (EU fig.). Women with BRCA1 also have a 35-70% risk of developing ovary cancer, compared to 2% for women in the general population (US fig.).
It was a birthday card from my mother written more than 10 years earlier, for my 18th birthday. I couldn’t remember ever seeing it before. Back then, I was a teenager, skipping school, partying and staying out all night to avoid going home and seeing her dying. I couldn’t stand hearing her coughing and gasping for air as the metastasis took over her lungs and silenced her voice and laughter.
My mother was diagnosed with breast cancer, her mother with ovarian cancer. Both died before the age of 50. My sister and I were lucky. We got tested for the BRCA1 gene and were given the possibility to regularly do check-ups and prophylactic interventions.
Inside the card there was a quote from the book the Little Prince that my mother used to read to me as a child. It was from the ending; when the Prince tells his pilot friend that he has to go but will leave his body behind and wishes his friend, when watching the stars, to hear the Prince’s laughter. Following the quote, she wrote ‘I hope you will find happiness again, love, Mum’.
Year after year, my risk for cancer increased and the doctors started looking more and more serious when examining any possible shade of abnormality. After my first biopsy, I finally decided to do it. I underwent a full hysterectomy and double mastectomy. As much as it feels wrong to undergo surgery when you are healthy and remove organs that are not (yet) sick, it does also feel right. I am grateful for the advancement of science, giving me the choice and chance to live.
Let’s fast forward another decade. I was sitting on a chair at the tattoo saloon in Brussels, listening to the ink needle penetrate my skin. l had separated from a long-term relationship that towards the end made me cry more than l smiled. l engraved a fine horizon line and a small star on the inside of my wrist. This was the drawing on the last page of the book. Now, l am in a good place, with a partner whom l laugh with again. And in case l would risk losing myself again, l will look at my star and remind myself about my mother’s laughter and words, to be happy.
October is the Breast Cancer Awareness month, an opportunity to remember those we lost, the strong survivors and those of us that actively have been able to alter the statistics.
A decade from now, I will (hopefully) do what neither my grandmother nor mother had the chance to do, celebrate my 50th birthday. This weekend, I will, together with my partner and some friends, walk the annual ‘Race for the Cure’ (in COVID-19 fashion: the pink ribbon mask). Find your local event and join too!