Almost a quarter of a million Australians carry a gene putting them at high risk of cancer. Gyan Gaiter is one of them. But instead of enduring the torture of simply waiting for the cancer bomb to go off, Gyan has become part of a vanguard of young women choosing to take control. This is her story.
Gyan Gaiter’s cancer risk is akin to that of stepping onto a doomed plane.
“If there was a 90 per cent chance the plane would crash no-one would get on, well my situation is a lot like that,” she said.
Gyan is 24 and healthy. She also hosts a gene mutation that will most certainly kill her.
In January of last year Gyan was tested for the defective breast cancer gene BRCA1, about three months later the results came back positive.
“Our family history is not good, this gene runs right through it,” Gyan, of East Maitland, said.
Gyan has lost two aunts to breast cancer. One was diagnosed at 32 while another died at 35.
Another aunt survived breast cancer but eventually died when the disease later surfaced in her ovaries.
“I’ve known this has been in our family since I was 15, but that didn’t stop the shock,” Gyan said.
“When we got the news mum and I just sat in the car and cried our eyes out . . . we were flawed.”
Gyan is now three months out from undergoing a preventative double mastectomy (and subsequent reconstruction), a decision she made before being tested for the gene.
“I figured that if I’m going to go down that path and find this out then I’m not going to mess around with it, especially when the likelihood of me developing breast cancer is between 85 to 90 per cent.
“Some women choose surveillance, and that’s what’s right for them, but sometimes it can be too late. I would hate to have that regret.”
Any doubts Gyan had about undergoing the mastectomy were quickly obliterated when a recent ultrasound revealed a lump in one of her breasts.
“Even though the lump was benign that experience really put the whole thing in perspective,” she said.
“The minute I found out about the lump I separated myself emotionally from my breasts because this is like living with a time bomb.
“But I have been quite emotional about it. It’s only been in the past three to four months that I’ve really started to accept that this is what I’m going to do.”
Gyan’s news came shortly after actor Angelina Jolie revealed she also carried the gene.
“Her story did push me to be tested. We (Gyan and partner Ty) just decided we’d like to know now so we can deal with it and start the rest of our lives,” she said.
Post mastectomy Gyan’s chance of developing breast cancer will plummet to less than five per cent but the risk of ovarian cancer will remain.
“I have a significant risk of developing ovarian cancer but I can wait until I’m 35 for that one because it’s not as early onset,” she said.
“I want to have children first.”
Earlier this year Hunter researchers revealed their part in a groundbreaking technique to reduce or delay the need for preventive mastectomies among women at high risk of breast cancer.
According to a study – published in the US journal Radiology – the non-invasive scanning technology (magnetic resonance spectroscopy) detected a series of biochemical changes in breast tissue which could provide early warning signs and improve ongoing risk management for women with BRCA gene abnormalities.
Mutations with BRCA1 and BRCA2 bring a 50 per cent risk of developing breast cancer before the age of 50, and many carriers opt to have mastectomies to avoid getting cancer later in life.
“Most of the time the BRCA1 cancers are triple negative which can be the most difficult to treat,” Gyan said.
“Only one generation above me had no idea about any of this and that’s another reason I’m not messing around.”
But Gyan isn’t the only one on this emotional journey. There are also the men in her life.
“Ty has been great. If anything, he has made me deal with all this and he’s dealt with my emotions,” she said.
“But it’s obviously a really emotional thing for my dad. But I love him and wouldn’t trade him for anything.”
Carrying BRCA1 has also forced Gyan to think about her future children and their risk of inheriting the gene.
“There are ways (prenatal diagnosis) to not pass on the gene but I couldn’t do that because if my parents had done that then I wouldn’t exist,” she said.
“Besides, if I have daughters and it affects them there could be a cure or better ways for them to eliminate their risks.
“It’s just so sad that one generation can be so ravaged while another has choices.”
Gyan is aware life post surgery won’t be easy and is mildly prepared for her changed appearance.
“I know it’s going to be a shock, I’m not blinded by it but ultimately the relief afterwards will be worth it,” she said.
The fledgling advocate is also in the early stages of establishing a support group for other young women with the BRCA1 gene.
“I also want to get my story out there. I don’t see the point in not talking about this, that’s when things become dangerous.”
On July 10 Gyan will celebrate her 25th birthday, 20 days later she will say goodbye to her breasts.
“We’re going to have a boob-themed birthday party complete with boob cupcakes. I mean when will I ever going to get a chance to do that again?” she said.
“Things are often just the luck of the draw and there are a lot of people out there with worse things than me, things that can’t be fixed so I’m lucky.
“You have to take the positives where you find them.”
Research into genome testing impact on women
Research assessing the impact of genomic testing on women with a high-risk of developing breast cancer has received backing in the latest round of funding from the Cancer Council NSW.
The research, from the University of NSW will look at the short and long-term psychological and behavioural impacts of gene testing for breast cancer in at-risk women.
Rapid advances in genomic technology now allow for testing for common genetic variants associated with breast cancer risk for the majority of hereditary breast cancer families.
These advances will enable targeting of prevention and screening strategies to high-risk women.
The study – led by associate professor Bettina Meiser – will assess the psychological and behavioural outcomes, including uptake of screening and preventative strategies, in 400 high-risk women, who will be invited to receive the results of their genomic testing.
Meanwhile a new approach to ovarian cancer detection developed by UNSW vice-chancellor Ian Jacobs could lead to widespread screening for the disease that kills about two in three sufferers in Australia.