I’m a 38-year-old Belgian man, born in 1985. I carry a BRCA1 mutation, which I’ve inherited from my mother. This was discovered in 2016, following a string of cancer cases in our family.
In 1996, my mother’s older sister got breast cancer, at age 49. She was operated (single mastectomy) and made a full recovery.
Fourteen years later, my mother got ovarian cancer, at age 61. Her ovaries and uterus were removed, through a rather drastic surgery called primary debulking. This was followed by a few months of chemotherapy. It took a big toll on my mother, but she made it through. A few optimistic years went by, our eyes firmly fixed on the five-year ‘cancer-free’ horizon.
Then, in 2014, my aunt developed breast cancer for a second time. She underwent surgery again, this time breast-conserving, followed by a brutal year of chemo and radiation therapy. She came out of it withered and weak, but, thankfully, alive.
In that same period, my mother started behaving unusually. She had always been an extremely energetic and organised person, but now she was forgetting things and missing appointments left and right. It gradually worsened, until she’d lost all sense of time and was no longer able to make simple day-to-day plans. An MRI of her head revealed that she had a brain tumor the size of a golf ball pressing on the front part of her brain, obstructing her executive function. The tumor was a metastasis of her ovarian cancer five years prior. It had gone undetected despite her frequent check-ups because, it turns out, the brain is an ‘island’; we have a blood-brain barrier that partially isolates our brain from our circulatory system, to protect it from harmful substances in the blood, but in doing so also ‘shields’ it from cancer treatments and screenings. In other words, something bad can be developing in the brain without it showing up in blood results. Luckily, my mother’s brain tumor could be removed and she made a spectacular recovery. It also turns out the brain can bounce back quickly.
Two sisters, four cancers, in less than twenty years; that was a lot of cancer in a short time. My aunt’s doctors (at Institut Jules Bordet) became suspicious of a connection. To screen for an underlying genetic cause, they recommended our entire extended family get tested for BRCA1 and BRCA2, which we did in 2015–2016. A BRCA1 mutation was found in my aunt, one of her two daughters, my mother and myself (her only child).
My aunt’s daughter, 36 at the time, immediately opted for a preventive double mastectomy. She couldn’t bear to live with the elevated threat of breast cancer hanging over her head.
My aunt and my mother took no additional preventive measures. They were 68 and 66 at this point.
I, as a young man of 30, received much less ominous prospects: ‘1% risk of breast cancer in old age. Slightly elevated risk of prostate cancer, get tested after 40. If you want kids, come see us, there are options.’ Being a bit of a late bloomer, children were still the furthest thing from my mind at the time, so I filed it away under ‘future problems’.
Now, eight years later, that future has arrived. I got married and I would like to have a child. Having seen all the suffering caused by the BRCA mutation in my close family, I desperately want to spare any children of mine the same fate. My wife and I consulted with the Centre for Human Genetics at UZ Leuven and we’ve chosen to get pregnant through IVF + Preimplantation Genetic Testing (PGT). We hope this can finally break the chain of inheritance. It’s a complicated and stressful process, but we are hopeful. We’re currently on our first attempt.
Sadly, my mother will not be around to witness it. She passed away in 2020, at age 70. The radiotherapy she received after her brain surgery had left collateral damage in her brain, which gradually caused it to atrophy over the years, until she could no longer function at all. After a decade-long battle full of devastating illnesses and false hopes, her BRCA mutation still killed her in the end. It’s a heartbreaking injustice.
Being the social animal that she was, I know my mother would have loved to have a community like the BRCA network. It’s part of the reason why I want to give it my support and hope that it succeeds.
BRCA network asbl/vzw
