My name is Gyan and I am 24 years old. This is my Pink Hope story.
I have an extremely strong family history of breast and ovarian cancer; I have lost two aunts, my grandmother and her three sisters to breast and/or ovarian cancer.
When I was about 15 one of my aunts who at the time was battling ovarian cancer was tested for the BRCA1 genetic mutation and found out she was positive. Mum always tells me how brave she was always trying treatment after treatment to try and discover a way to beat cancer, even if it couldn’t help her, she wanted to find a way that it could help future generations, and that is what she has done, at the end of the day, she has saved my life.
I have known since I was 15 that we had the BRCA1 genetic mutation running in our family and that one day I would need to be tested. In January 2014 I decided I was ready to know. Six weeks later we found out I was positive. It was the shock of my life. I was 100% sure I would be negative, I don’t know why.
The BRCA gene is one that everyone has that acts as a tumour suppressor. What this result means is that my BRCA1 gene is faulty. This significantly increases my likelihood of developing breast cancer to 85-90% in my lifetime and at a younger age. It also drastically increases the likelihood of me developing ovarian cancer compared to someone with a normal BRCA gene.
I have had a really tough year emotionally adjusting to this, especially when trying to plan my life out. While my friends are planning weddings, I’m planning preventative surgery and unfortunately the out of pocket costs are about the same.
I have never wanted to over dramatize what I have been going through because I know people are way worse off then me. But I guess I feel that now I am BRCA positive it’s not a matter of if, but when, and I am not waiting around for it to get me first. I am lucky enough to have warning and there is no point sticking your head in the sand about it.
Since receiving my positive result, I have had multiple ultrasounds, MRI’s, specialist appointments and even a biopsy after a lump was found (benign – thank god); all of which have contributed to my decision to have a preventative double mastectomy with immediate reconstruction in July 2015.
There is not a lot of support for BRCA positive women locally and I have found it hard because many people don’t really understand the entire situation. Most don’t get why you would make such a drastic decision (to have the preventative surgery) and be able to talk about it so openly. I am feeling very desensitised to it all these days; mastectomy discussion; breast reconstruction pictures; general boob talk – it is all just a part of my daily life now.
One organisation that does exist however, is Pink Hope. I have been educated and informed about my options via the website and forums like the various Facebook groups. I have become less anxious about attending specialist appointments, scans, and the upcoming surgery, all due to the conversations, advice, stories and experiences shared by women from all over Australia through this website. They are also helping me try to organise a local coffee catch up, so that the high risk people in Newcastle who aren’t online or want to catch up in person have somewhere to go.
This diagnosis has given me an opportunity that previous family members never had. This is why I was always going to go through with the surgery. We are going to beat breast cancer before it even gets a chance. I say we because I could not have gotten through this without my family and close friends, especially my parents and partner Ty, they have been my rocks throughout this whole process.
By going through with this surgery, I am giving myself a much more optimistic future. It is probably the scariest thing I will ever do, and will be painful both emotionally and physically.
But when it is all over, we can move on and know that I have done all I can to reduce my risk and give myself the best chance possible for a long, healthy, and happy life.