Similar to Angelina Jolie, Grace Marshall and Lydia Hughes may have inherited the BRCA gene meaning they too need to consider major surgeries in the future…
Grace, a 21-year-old civil servant, and Lydia, a 20-year-old Lancaster university student, may have the BRCA2 gene meaning they have a lifetime cancer risk of 70%. Most women have a 12.5% lifetime risk.
Women with the BRCA2 gene need to consider major preventative surgery like mastectomies and hysterectomies which is a difficult decision to make, especially at the age of 20 and 21.
The BRCA gene (types one and two) are a genetic mutation that increases a person’s chance of developing breast and ovarian cancer in women, and breast and prostate cancer in men. The gene itself does not cause the cancer to occur; the BRCA mutation impairs the cell’s ability to repair DNA damage making it easier for a cell to become cancerous.
Grace’s mother and Lydia’s auntie, Diane, was diagnosed with cancer in 2001. After a family history of breast cancer she was tested to see if she had the gene. Unfortunately, Diane did have the BRCA2 mutation, and soon after finding out, two of her three sisters found they had the gene too. This lead to their double mastectomies and hysterectomies.
Most young women are thinking about planning what holiday to go on next year, or what festival to go to, but that is different for girls like Lydia and Grace. They will soon have to decide when to take these genetic tests to find out if they have inherited this gene; and from that plan when and if to have preventive surgeries.
“When I was 18 my Mum didn’t want me to find out and I wasn’t bothered either way,” Grace said. “Now Mum’s like, ‘I think you’re mature enough to know’. At the end of the day, it is my choice.”
Lydia said, “I’m not going to have it now, so I’m not going to know. Because I’m not having it now I’m just going to continue as normal until I do have it. I feel like I know that these decisions are coming up but I don’t have to think about that until I have the test. It’s like it will become real if I do have it.”
Lydia currently plans on having the test in her late 20’s, whilst Grace said the only reason she has not had it yet was because she’s been busy, not because she is wanting to hold it off.
Lydia explained her reasoning for wanting to hold off on having the test, “If i found out now then I have to make these decisions now, and I don’t want to because I’m 19 [at the time of the interview], living at uni, and just… that’s not what I want to think about.”
Despite the big decisions after having the genetic testing, Grace said nothing would stop her having the test done, “ I see my auntie Colette and Claire, they’ve had the gene and they’re fine, and I see my Mum who got the actual cancer and well… she’s not fine, but she’s lived for over ten years. If I do get it there are things to stop it, and if it is terminal, you can still live quite a lengthy life with it.”
Lydia also had quite an optimistic view on her chances of having the BRCA2 gene, “It doesn’t bother me because I knew my Mum (Colette) and auntie Claire had the gene and I know that there’s options so I can just have preventative surgery giving me the same chance as everyone else.”
People who have the BRCA2 gene have a 50/50 chance of passing it on to their children. When Lydia was asked if it would stop her having children she said, “No because I know how we have been growing up knowing this and I know that we have all been fine with it. I know by the time that we have kids, my Mum’s been telling me they’re finding new ways to treat it and flip the gene so it’s not mutated anymore, so by the time I have kids this might have come into fruition.”
However Grace had different thoughts, “If I did have it (the gene), I’d never have a child without making sure that the child wasn’t going to get it because I don’t want to pass it on anymore.”
Finding out you may inherit a gene like the BRCA2 and deciding to have genetic testing to find out can be stressful for any young adult, and not everyone will have the same family support and positive outlook as Grace and Lydia’s.
From one young adult in this situation to another, Grace said, “I think if you are stressing about it you should find out. If it’s something that plays on your mind every day, then you need to know. Think about how many people have it, and how many people live with it, I don’t think it should be a thing that is hidden away from. There should be more of casual look on it. Sometimes it’s like the C bomb isn’t it?”
Lydia said, “Even though you do have a gene that puts you at a higher risk, it’s a blessing in disguise because then it opens the doors to so much more help. You’d get offered so many things, like counselling, and more screenings more regularly. We might have a higher chance of getting cancer, but we have a higher chance of it being found early and treated properly.”
If you are struggling with finding out the results of your test, contemplating having the test done or you’re simply just wanting to know more about genetic mutations, go online to www.cancerresearchuk.org or go speak to your local GP.