How do you tell your kids they could have inherited a cancer gene?
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One brave Canberra mum, who carries the BRCA2 gene, outlines the challenges of educating her children on the risk of hereditary cancer.
For years, my increased risk of cancer only affected me. It was my risk to manage. It was my responsibility to look after my health so I didn’t have the same fate as women before me in my family. That’s why I had a risk-reducing mastectomy and removed my tubes and an ovary before my 40th birthday.
Fast forward a few years and my eldest daughter has turned 12. She is approaching the age where she’ll believe what it says in Google and she soaks up every word she hears. She’ll know what it means for her Mum to work at a preventative health charity who supports ‘high-risk for cancer’ people. She’ll read the articles I’ve written raising awareness for our community and sharing my own personal experiences. She’ll probably read this (which is why I’ve written it anonymously).
I found out I was high risk for cancer (carrying the BRCA2 gene mutation) when I was 33, in a loving relationship and pregnant with my second child. It was a tough pill to swallow but my Mum had ovarian cancer at the time so I was more focused on her than my own cancer risk.
When a woman tests positive to a BRCA gene mutation, health professionals advise you to have kids early, breastfeed as much as possible, undertake six monthly screening (MRIs, mammograms and ultrasounds), and then start your risk-reducing surgeries such as a mastectomy and removing your tubes and ovaries. You should do all of this before your 40th or 45th birthday (depending on if you carry a BRCA1 or BRCA2 mutation).
Some people will go through life not knowing they carry a gene mutation. And many others will experience generations in the family affected by cancer and cancer risk. There’s so much to take in. As a carrier of a gene mutation, you need to understand that for each family member there is a 50:50 chance that they too could carry a gene mutation.
This doesn’t mean that 50% of families will carry a mutation, it means that each embryo (person) will have a 50% chance of carrying a mutation. In my family, there are 6 out of 10 people who carry the mutation, both males and females. You also need to understand that each family will have a different level of risk, depending on family health history and onset of cancer. And if you don’t act on your risk, the consequences can be horrific.
Imagine the uncertainty a young teenage girl, like my daughter, would feel, of hearing they have a 50:50 chance of carrying a gene mutation which will mean they might have to undertake surgeries later in life? But you might not so you shouldn’t worry about it until you get tested. And then imagine the pressure of finding out you carry a gene mutation when you are 18 or in your early 20s when you are fancy-free and are still finding yourself.
Health professionals advise us (parents) not to genetic test our children until they are old enough to deal with this information or when they could take action based on results. In many respects, this is very wise advice. I have always been of the mantra ‘Don’t waste worries until there is something known to worry about’. This works for me but does not work for everyone, especially little people who have watched generations of their family affected by cancer.
There is the promise of science and research that will improve the experience for the next generation. The promise of ‘turning genes back on so they do their job’ or of improving how we can screen and prevent cancer for the next gen. But now that my kids are approaching the age where they will understand bits of this puzzle, I worry progress isn’t happening fast enough.
There are guidelines and calculators to help people manage their physical risk when they are impacted by hereditary cancer but how and when do you talk to the next generation about that prospect? How do you tell each child not to worry because there’s only a 50% chance they’ll have the gene mutation AND even if they do have it, there isn’t a guarantee of cancer?
How do you tell someone who watched their Grandma pass away from ovarian cancer, then watched as their Mum had risk-reducing surgery, that they don’t need to worry about the genetic risk of cancer until they are old enough to do genetic testing?
Expert Genetic counsellor Belinda Dopita says “Genetic testing of BRCA1/2 is typically not recommended for children for a number of reasons. Primarily, there is no benefit of testing children from a risk reduction point of view, as risk management guidelines recommend screening in adulthood (often from the age of 30). In addition to this, testing of children removes their autonomy and ability to instigate informed testing for themselves.”
“Genetic testing (and genetic counselling) avails the individual an opportunity to understand the implications of testing for themselves. Information such as screening and management recommendations and even implications for insurance. Finally, waiting until adulthood when this information is most relevant, improves the likelihood of retention of information and understanding risk. It reduces the impact a ‘genetic result’ may have to a child’s developing identity.”
While the BRCA gene mutation was discovered in 1994 and people have been undertaking the harrowing task of telling the next gen about hereditary cancer risk for many years, there are no evidence-based guidelines and resources with recommendations of what to do to make this easier on the next gen. In some high-risk families, cancer strikes at an earlier age. My friend’s aunts died of breast cancer when they were in their 30s so my friend had her risk-reducing surgeries in her 20s, much earlier than the guidelines recommend. How do we know when it’s best for our family to start the conversation?
I’ve got three kids and they are wildly different in their capacity to digest information, especially when the information is ‘maybe this scenario’ or ‘maybe that scenario’. Some kids worry, others don’t. As parents, we will witness the repercussions of our decisions and our genetic makeup, as it impacts our kids. Many parents in the ‘high-risk’ community feel guilt and worry about passing on a mutation to a child. And this is not just about women, men have just as much chance of passing a gene mutation onto a daughter or son as women do. There’s so much to consider.
So how do we as parents, address this huge and important information piece for our kids? Kids are way more intuitive than we give them credit for, I think my 12-year-old would already have an inkling. Another concept to consider is, how do parents cope not knowing the genetic makeup of their children until their child decides to test? What if that child doesn’t test? It’s like a minefield of uncertainty.
I remember clearly the conversation I had with my Mum all those years ago, when she told me about how I might have inherited a gene mutation from her and I remember being confused about what to do. I am one of the 1 in 400 people who carry an identified gene mutation which puts you at risk of cancer. I don’t know how many of my children will join me in this cohort. Is there a right time to openly discuss this or do we just go by chance?
I have thought about this conversation for years and I am no closer to a decision than I was 10 years ago. But time is ticking and I am torn between protecting my kid and informing her. I don’t know what the answer is.
Feature image from Kindel Media via Pexels
