Why and Where Did I Start?
When I was 17 I lost my Auntie, who was only in her 30s when she passed away. She was diagnosed with breast cancer in her late 20s. With this in mind I went to my local GP to discuss my family history. I was then only 18 at this point however it was clear that breast cancer was a dominant feature in the females of my family. The doctor gave me a family tree document to take away with me. I had to complete who had been diagnosed and various details of the cancer. This was sent off to a geneticist to analyse. I had an appointment with Dr Lisa Walker at John Ratcliffe Hospital in Oxford, she was exceptionally helpful in discussing my risks and how to move forwards. She was very matter of fact but charismatic at the same time, this helped ease my nerves about discussing something quite frightening.
Due to my young age and lack of opportunities in genetic research, it was decided that I would return in 5 years to discuss my family history and the options that were open to me. Knowing what had happened to my Auntie and being very aware of how dominant breast cancer was in both sides of my family, it was always something that was in the back of my mind. Therefore, after the 5 years had passed, I requested a follow up appointment at Oxford Genetics Department. There had been various advances in genetic research by then and testing the closest living relative to my auntie (as this side of my family posed the biggest risk) was an option. My Dad agreed to be tested for the BRACA mutation, and if his result came back positive, I would then be tested. This is the current protocol for genetic testing. Waiting for these results was not a pleasant experience and as time went on I got more anxious about the potential result. As Dr Walker had explained, a positive result means I could have BRCA and then we could formulate a plan but a negative result, although a good in respect that I do not carry BRCA, could mean that the cause of the family history is unknown. Each result came with pro’s and con’s.
My Dad’s blood test came back negative for carrying the BRCA mutation which was reassuring to know, however it still left my family history and risk ambiguous. After this result I had support from a genetic counsellor provided by Oxford Genetics Department. During these appointments we discussed the implications of the result, where I personally fell in their risk categories and also potential ways forward. I attended these meetings with my partner so he could understand what was going on, and what the future could have in store. He was incredibly supportive and made the decision process and all that it entails easier.
Due to my family history I was placed in the NACE risk category 2. It was then that future options, such as a mastectomy was discussed as it could reduce my risk by 90%. Everyone has their personal feelings towards what they feel they should do, it was not a decision that was made lightly, however over the past 10 years I had time to think about what ‘could happen’ and had processing time of potential options available to me. My partner and I would love to start a family in the near future however having seen the heart break my cousin went through and the things he was exposed to when my Auntie was so poorly, I would not want that for my children. Therefore, I opted to have the mastectomy now, rather than wait until after we had had a family. There would always be a risk of waiting too long and potentially developing cancer, but then also having a mastectomy post child I felt would be a lot of pressure on my family. When we start a family I want to be able to put my heart and soul in to it and not have to worry my family with recovery periods or cancer fears. I appreciate that not everyone has the luxury of choice that I had with when or if to undertake this surgery, however if you are considering it, the purpose of my writing is to help you come to a decision as to whether it is right for you, but also reassure you that if you decide to go ahead, ‘you can do this’ and I want to support you in your big decision.