These stories are provided by women who have made a decision about genetic testing. They agreed to share their experience with you. The stories may be helpful as you make this decision yourself. It is important to remember that people’s individual views and experiences will be different.
“I think that perhaps if had tried to make a decision about whether I wanted to know if I had an altered gene or not at the same time as my diagnosis, it would have been a little bit too much. It was a bombshell to find out that I had cancer in the first place. I had a manic couple of months after first being diagnosed - there's just so much going on. But since then, I've had time to think about things like genetic testing. I have thought about if a genetic test result did come back positive, what would I do about it? When the time comes and if I do have the test done, I'll know what I want to do. I've had time to think about it.”
“I decided to have the BRCA test mainly because of my older sister, I've got a daughter who's six and I have a younger sister who's eight years younger than me. It was more to protect them by finding out if I carry the altered gene. Also, I wanted to have the test to help make a decision about whether or not to have another mastectomy or any more surgery. In my personal situation, it was just another test that I was having done, amongst all the other things that I'd been having during my treatment.”
“When I was diagnosed with breast cancer, genetic testing was offered to me quite early on because of my age, my mum had breast cancer and I had triple negative breast cancer. It was never really in question whether or not I was going to have the test. If the test had been offered to me ten years ago, I think I would have taken it then because I would rather know either way. For me, the unknown is more difficult so I think it was just something I needed to know.”
“After I found out that there's things you can do to prevent cancer and that I would know for my own three children, I thought I'm going to go ahead with it. It means that if my children have the same gene that I've got they could have screening from a younger age. So I really did it for the children. It took about eight weeks for the results to come initially. My BRCA1 results were negative, but they found an unknown [a variant of uncertain significance] in my BRCA2 results. I did feel relieved that I haven't got an altered BRCA1 gene. But I was told that they're not sure about BRCA2 and on top of that they also found something else they’ve never seen before, so I’m quite unique. After my first results, I was asked to enter a research study so they can look into my results further. So I did another blood test and it will now take 12 months before I find out about that one. If I've got an altered BRCA2 gene then we can look at extra screening and preventive surgery.”
“I originally thought well maybe it would be worth knowing whether I have the altered gene and that's why I went through the first part of the genetic testing. But once I went into it further, I realised there were not a lot of options. I was already down for yearly mammograms once the treatment was finished anyway because of my age and family history of ovarian cancer. I didn't want to go down the route of having an oophorectomy and double mastectomy because I hadn't had a family at that point. My partner and I really wanted to have a family in the future. There was no guarantee that I would have the altered gene. I could sit there with the weight on my shoulders knowing about whether or not I have the gene, but I could also be hit by a bus tomorrow. Even if I had taken the test and they found the altered gene, I was not going to have any of the preventative surgery because I still wanted to have a family.”
“I'm not totally sure about what to do. I know that knowledge is power but I've had my children when I was ready to have them. If I was to discover that there was a genetic link, and my daughter also had that link, it almost kind of writes her future. In a way, it might make her make decisions in her future not necessarily because she wants things to happen at a certain time but she might be concerned that she might get breast cancer.”
