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'It's made such a big difference': Real Self Checker Fole wants to raise awareness of BRCA gene tests

October 27, 2023 11:53am
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'It's made such a big difference': Real Self Checker Fole wants to raise awareness of BRCA gene tests

After losing both her mum and grandma to cancer and discovering that she had a BRCA2 gene, which left her with a high chance of contracting breast cancer herself at the age of just 25, Fole took the courageous decision to have a prophylactic double mastectomy.

'It's made such a big difference': Real Self Checker Fole wants to raise awareness of BRCA gene tests

The surgery has reduced Fole's risk of contracting breast cancer

The surgery has reduced Fole's risk of contracting breast cancer to around five percent – and she wants to share her experience both to honour her mum and grandma and to help other people with the BRCA gene.

Because of her family's history, Fole underwent genetic testing which confirmed that she was a BRCA carrier, leaving her at increased risk of cancer.

She said: "I have a gene defect that makes me high-risk – 60-85% risk of developing breast cancer in my lifetime, 50% risk of developing ovarian cancer and 40-50% risk of developing pancreatic cancer. My mum was a BRCA carrier and passed away from pancreatic cancer when she was 37 and I was 16. It's not only impacting an individual, it's impacting generations of people. My grandma died in her 50s and she was most likely a BRCA carrier, though she wasn't tested.

"When my mum was diagnosed with pancreatic cancer we went as a family to a genetic testing clinic. I was really fortunate living in Oxford that they've got really amazing hospitals and a really amazing genetics team. I was 16 and doing my GCSEs, so I didn't feel emotionally ready so I parked the testing for a while.

"I always said that when I was 30, I would go and get my testing done because that's roughly when your risk is said to go above the risk of the general population. But when I was 22 I had quite a large cyst on my ovary, about 18cm, and I just thought I know I'm at risk of having this genetic defect and this inherited risk. That's not a good sign, so that's what spurred me to get the testing. When it came back positive it wasn't shocking to me at that point."

Fole says that getting support from charities including CoppaFeel! and being able to talk to other people with a similar experience was hugely important to her.

"How do you deal with it when you're 23? I don't know," said Fole. "It was all a blur, and that's partly why I started getting in touch with CoppaFeel! and Black Women Rising, which is a cancer charity for black women who've been diagnosed with breast cancer. And I also got in touch with Future Dreams House, which is a breast cancer charity with a dedicated space in King's Cross. They run BRCA support groups, so that was incredibly helpful in the lead up to my surgery, as not only was I able to meet people who'd had breast cancer and mastectomies and reconstructions, but also people who were going for preventative ones. That was amazing and there was a lot of talking.

"I don't shut up about it now because I'm like well if I have to deal with this thing I'm not shouldering the burden alone. Everybody's going to hear about it!

"One of the big things I struggled with initially was that a lot of people don't know what BRCA is, so you have to explain to someone what it means and them going 'oh, that's terrible. That's really scary' and I'm like, yeah but I've just had to spend the last 40 minutes explaining it before we get to the 'so how are you doing?' bit. Everybody has the same questions which is really valid, but it suddenly becomes more of a science lesson rather than me being able to say 'I need some support and help and I want you to tell me that everything's going to be okay.'"

Fole wasn't immediately certain that she wanted to have the surgery, but says that talking to other people in similar situations really helped her work out what was best for her.

She said: "At first I was adamant I didn't want surgery, but then I went to a mastectomy show and tell. It was maybe six women, some of whom had had prophylactic mastectomies and some of whom had had breast cancer, so the first part was a plastic surgeon from Guy's Hospital giving a talk about different surgery options and the second part was going into a room and people taking their tops off and showing what their reconstruction looked like, explaining the surgery they'd had, how long it took them to recover personally, and how they're feeling a few years on.

"One of the models said 'if you're considering it I'd get it done and out of the way because once it's done you can just live your life' and when I heard that I realised I wanted to get on with my life and not have this thing looking over me. And the moment I woke up from surgery it felt like a sigh of relief and such a weight off my mind. I don't have to think about that any more and my risk has gone from 70-80 percent to about five percent."

The surgery, in May this year by which point Fole was 25, removed all of the tissue from just under her collarbone and armpit all the way down to the tops of the ribs, and included the removal of her nipples. It was followed by a full reconstruction.

"It's made such a big difference and I'm so lucky to be the first person in my family to have access to that, and to be able to do something about it. Knowledge really is power. It makes such a big difference knowing compared to not knowing. The fear when I first started doing the genetic testing was whether it would do more harm than good, whether I would worry about my health and whether it was going to become a fixation, especially with the history that my family has. But it's actually done the opposite. It's given me freedom, it's given me peace of mind and it's reduced my risk of having certain types of cancers, so it's felt very freeing. And it's all been through the NHS. I know people have very different experiences but I was very fortunate."

Fole says that having the support of her partner, friends and family, has been a tremendous help, along with the friends she's made through the BRCA support group she attends.

She now wants to share her story to help others in a similar situation.

"CoppaFeel! do a great job with story sharing, so I'd seen stories where people's mum or grandma had breast cancer and recovered and had that joyful element, whereas I had the opposite – I'd lost two generations on my mum's side to this because of this inherited risk and I don't want to be the third person and third generation to go this same way, so I was keen to share that.

"I'm so fortunate to have this knowledge, but it's come at a great loss. It makes me sad that my mum and grandma made the biggest sacrifice so I see now that I'm honouring them in everything I do. Having seen what going through chemo is like it would be so foolish for me not to do this.

"Any information, any story, any perspective around breast cancer is so important and even if one person hears one of our stories and is inspired to check themselves or is worried about something and this prompts them to go to the doctor then that's something.

"For so long I didn't want to check myself because of the thought of what if I find something, which is obviously the wrong mentality to have. I think if I'd seen a campaign like this with someone talking about their family risk I'd have seen it's a real privilege to be able to catch these things early if they're there at all. You owe it to yourself and the people around you to make sure you honour your body by getting it checked and dealing with it."

Find out more about the BRCA gene here: https://coppafeel.org/breast-cancer-info-and-advice/what-is-breast-cancer/brca-gene/

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