Nine years ago Siobhan Gracey was four and a half months pregnant with her eldest daughter when her mother died from ovarian cancer in November 2010. Her mum Geraldine Aldred had the BRCA1 gene which makes certain cancers incredibly likely. And in August 2013, three months after Siobhan got married and pregnant with her second child, she found out that she too had the gene.
It meant she had a 90% risk of developing breast cancer in her lifetime and a 60% chance of ovarian cancer, the same illness which had killed her mother at the age of 51.
NHS bereavement officer Siobhan, whose twin sister Rebecca also has the gene, is quite calm and matter-of-fact about ‘bracka' (BRCA).
The 29-year-old accepts any one of her three children with husband Callum; Orla, eight, Isaac, five, and Scarlett, three, have a 50/50 chance of inheriting from her. Her family, from the Wigan area, have had to deal with the damages of cancer for almost all her life.
"She had a single mastectomy and chemo and radiotherapy. It was Stage 3 cancer, it was aggressive so they could not give her the all clear for seven years."
In 2009, when Siobhan was 19, the cancer was confirmed to have returned - this time in Geraldine's ovaries. For years she had been going to the doctors with health concerns but had been told it was IBS. She died a year later at the age of 51. But in between diagnoses in 2002 her mum, whose sister also suffered from breast cancer, looked into gene testing.
Siobhan said: "My mum knew there was this family history of breast cancer. My grandmother had it and her sister died from breast cancer as well." The test came back positive for BRCA1 but Siobhan would have to wait until she was 18 to have the testing done herself.
"(My mum died) and at the time but I didn't want to get tested.” In the end she waited until she was 23, just three months after marrying her husband Callum.She said: "I was told I had the gene and almost straight away they present you with options. There's surgery or there's screening where they give you regular check ups such as mammograms. But there's not a lot of ways to screen for ovarian cancer. They told me if you want a family you need to do it now. And I knew I wanted a family first and the risk goes up dramatically when you reach 30. So there's a part of it which is almost like a ticking clock in your head."
In 2016 Siobhan had her third child, daughter Scarlett and soon started planning for a double mastectomy. “They recommend waiting a few years because otherwise your children might jump all over you," she said.
On February 15 this year Siobhan had a double mastectomy with reconstructive surgery at Wythenshawe Hospital. Even her nipples were removed since keeping them would have meant the cancer risk would have been higher. "That's what I'm sorting out now, I'm getting new nipples tattooed on.They offer you the chance to keep them but it was a no brainer for me to get rid of them."
Now her breast cancer risk is less than 10% - below the national average. And she will have her ovaries removed at the age of 35. Through the surgery she has been able to manage the risk. But she knows that there is a 50/50 chance her children will have inherited the BRCA1 gene - although they will not find out until they turn 18. She said: "We talk to them about it, as much as we can. We will always be there with them every step of the way. Orla has seen me go through what I have had to go through. She doesn't know about the gene but she knows I have got something that her Nana had, she knows I have had to do this to stop me getting poorly. If they want to get tested themselves at 18, I'll be there, I'll talk to them and be open. I just always knew I wanted a family. And I hope, with the advances that are being made, with the research, if they do have the gene they have more options than me. If you look at what options my mum had, what options I had, steps are being made all the time."
Siobhan has been documenting her life with the BRCA1 gene for more than year. It is called 'Keeping Abreast of Life ' - a title she adopted from a book her mother began when she was initially diagnosed with breast cancer. Writing four days after having her breasts removed and replaced she said: "I’ve been looking more at my scars over the past couple of days to get used to them and my new ‘foobs’ as people call them. I know they aren’t my old ones which I loved and were me but honestly even though it’s only been four days I’m really happy so far with how it’s looking."
Writing about Orla in May she said: "She knew exactly what was going on as I’ve always been honest with my kids about what’s happening. I was only a few years older than her when my mum had her mastectomy after her breast cancer diagnosis. I will admit I was worried about how she would be with seeing me after surgery with drains, dressings, limited movement, pain and fatigue. But honestly she has been so amazing and I’m so proud of her". She added: "I hope that when they come to the age of testing, and that’s if they want to be tested. Fingers crossed they do. I hope that they can think, my mum's done this and so can we".
Article Source: www.mirror.co.uk