Watching the hard-hitting storyline on Emmerdale about the Dingle family’s BRCA2 agony struck a raw nerve for one daughter and her father.
Maria Culley, 34, inherited the gene mutation from her dad, Michael Culley, 77, and the ITV soap’s coverage of the angst around whether or not to get tested led them to speak out about how they deal with living with the variant. The nanny and retired engineer only discovered they carried BRCA2, which increases the risk of developing breast, ovarian, prostate and pancreatic cancer when a letter arrived from Australia urging them to get checked following the death of a relative.
Now Maria, who made the brave decision to have a preventative double mastectomy last year, and Michael, who brought her up, are determined to raise awareness of BRCA2 in men. She says: “I’d always thought that the transmission of BRCA2 was typically from mother to daughter, so I was gobsmacked when I was told I’d had it passed on to me by my dad.
“I’d never heard of it before, and not only that, the gene can also be passed from father to son.” Maria and Michael were both tested for BRCA2 after a surprise letter arrived from the Australian Health Service in 2018, advising them to get checked given family members had it.
Michael’s sister Dawn Harris, who emigrated to Australia in 2010, died of breast cancer in 2015, aged 71. In 2021, her daughter, Karen Keirnan, also died from the disease, aged 57. Maria passed the letter to her doctor but only got tested in 2022 when she felt an itchy lump on her right breast.
“I made an appointment with my GP,” Maria, of Silsden, in West Yorkshire, recalls. “The results for BRCA2 came back positive, but the lump results were negative as it was benign. Naturally, I was over the moon to find out I didn’t have breast cancer, but I was devastated to discover I had the BRCA2 gene – putting me at greater risk of breast cancer in the future.
“Subsequently, the same year my dad was tested, and the results also came back positive for BRCA2.” Her sister Kate Culley, 44, was also tested but was negative for the gene. Maria, who says support is given to people who go for the test, adds: “You have to have counselling because you need to be in the right frame of mind to understand the decision in order to have the test.”
And she praises Emmerdale for tackling the issue of breast cancer and BRCA2 in men as well as women. Viewers have seen breast cancer sufferer Chas Dingle tell her brothers Cain and Caleb and son Aaron that she has BRCA2, and advise them to get tested in case they have it, too.
After dithering, Aaron agrees to put himself forward, as his mum, who has had a double mastectomy, stresses that men can also have the mutation. “More conversations can start to spark up because of Emmerdale,” Maria says. “It is amazing they are opening up the avenue for men, because men typically bury their heads in the sand. I suppose I did as well, but having those conversations is vital and seeing how it affects other people in the family.”
On her decision to have a double mastectomy, Maria says: “My other family members who have died didn’t get that opportunity and found out too late, because cancer took them. I am not sure my aunt knew she had it. So I thought, ‘I’ve got to do this, I can’t live like this, going from one scan to another. I’ve got this opportunity and knowledge is power and I can change the outcome to a degree’.
“I can actually enjoy what I’m doing now and not see a cancer advert on a bus and burst into tears.”
Michael, who is also from Silsden, was shocked to find out that he, too, was at risk of developing breast cancer. Thankfully, he does not have it, but he is booked in to have surgery for an enlarged prostate, which is something that men with BRCA2 are predisposed to develop. He says: “I feel terribly guilty that I’ve passed BRCA2 on to Maria, but I had no idea I had it. My daughter is only young, and I was devastated that she had a double mastectomy.
“But, at least now it gives me comfort that she won’t get breast cancer, or certainly, the risk is significantly reduced.” Michael commends Emmerdale for tackling BRCA2 in men, as well as women, and hopes it will save lives.
He says: “Emmerdale has undoubtedly made it easier to talk about. It highlights that men are vulnerable and they should be tested so they can know the risks. Historically men, myself included, tend to avoid doctors. But when something like this hits you, you start to realise just how at-risk you are.”
According to Macmillan Cancer Support, in the general population, less than 1% of men develop breast cancer, but the risk is higher if they have a BRCA2 variant. Of 100 men with the BRCA2 gene, between two and eight of them will develop breast cancer before they reach the age of 80.
The risk of prostate cancer rises to between 21% and 35% from 17%, and pancreatic cancer is increased from between 1% and 2% to 2% to 5%. And for women, the risks are even higher. Around 61% to 77% of women with BRCA2 develop breast cancer before 80, and 11% to 25% develop ovarian cancer. The risk of pancreatic cancer also slightly rises from 1% to 2% in the general population, to between 1% and 4%.
There is also a one in two chance that a parent will pass it on to a child. Dr Hana Patel, a GP and GP medico-legal expert witness, explains: “Breast cancer is often thought of as something that only affects women, but men can get it in rare cases. It grows in the breast tissue men have behind their nipples. It usually happens in men over 60, but can very occasionally affect younger men.
“It’s not certain that you can do anything to reduce your risk, but eating a balanced diet, losing weight and not drinking too much alcohol may help.”
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