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Since my operation I can honestly say that I have not had one regret. I no longer wake with the dreaded feeling of ‘will today be the day I find the lump’ to me that was how real it was.
September 30th 2013 marked a whole new chapter in my life and to start a new chapter you have to understand what goes before it…. December 1992 my life changed forever, it was Christmas and my mum (aged 42) found a lump in her breast. She was aware that this could be a cancer as her older sister had breast cancer diagnosed at 42 years old some 14 years previously (my mum was youngest of 3 sisters). Mum told me they thought it was a cyst and I believed her I was 21 years old and I think she was protecting me as I had 2 small children and she wanted to have a nice Christmas knowing she was going in for surgery before New Year. Obviously cancer was diagnosed she underwent mastectomy, chemotherapy & radiotherapy, then tamoxifen (hormone tablet).
Things were going well and ironically a few months after being told 3 years after the original diagnosis that the cancer was completely gone – it was back. She underwent further chemotherapy in a clinical trial for a drug that we commonly use now but died at 46 years old on August 3rd 1996, nearly 4 years from original diagnosis. I was always aware that there was a family history as my mum was 1 of 3 daughters and 2 of them had the disease and their Aunt in her early 40’s. I was seen in my early 20’s at my request for discussions about regular screening which initially would have been 10 years before my mum’s age (so 32 for me) but then research changed practice and I was to be screened from the age of 37. By the time I’d gone into the screening programme I’d already found 2 breast lumps and freaked out totally and been referred urgently to have checked out, thankfully both times nothing sinister found.
Although the paternal side isn’t really looked at as much in the genetic trail I also had on my dad’s side of the family my Nan and 3 of her sisters with breast cancer, sadly only 1 great Aunt survived. Our family history changed with my mum’s other sister being diagnosed which for me meant that partaking in regular screening was essential but I was always aware that to give myself the best chance of this disease not affecting me would be to have prophylactic surgery. I had discussed my options at all of my appointments over the years and was referred to Mr Brown in August 2012 to talk about the surgery and if it was an option for me. A gene of unknown significance has been detected in both of my Aunts, so we do not have the most publicised BRCA gene but Mr Brown informed me that my chance of getting breast cancer was 80% – it had always felt it would be my destiny to get the disease and this just confirmed it really. In my husband’s words “if you were a betting man you’d bet on that”.
So I decided I wanted the surgery and I wanted it before the age of 42 as that seemed to be a significant age in the family line. I had my first grandchild due April 2013 and wanted to be around to see him and hopefully any others that come along grow up – a chance that my mum was robbed of with my children. The process began I had to see the breast care nurse to discuss fully with her, the psychologist (thought it may have taken longer than 2 hours to analyse me !!!) before seeing the surgeon again to get listed.
During this time I obviously needed to discuss it all fully with my husband and my children about what I was going to do. Although they probably had reservations I know that I had their support and when we looked at the odds it was a ‘no brainer’ really. I didn’t really broadcast what I was planning but was not afraid to tell people. Angelina Jolie’s story broke when we were on holiday and I actually think that this helped – I think that she highlighted that radical surgery to try to eliminate developing the disease may to some seem barbaric but if you know your risks are that high it’s the only option. So, surgery set for September 30th 2013 I took the week off before my surgery – I needed to unwind and spend time with my family. It felt like a weird week and almost felt like there was an elephant in the room at all times!!!
We all knew what was about to happen but although we did mention it throughout the week it sometimes felt a little awkward (and that may have just been my feelings) I felt really nervous the first part of the week and felt a bit sick every time I thought about it but as the week went on I just kind of mentally adjusted myself to get back into the positive zone again. I think it was the thought of not being in control of a situation (anyone who knows me well knows I do like to be relatively in control!!) I had lots of support around me from family and close friends and I really could not have done it without them all – so THANK YOU! The night before surgery was probably the worst – not surprisingly. My son, his fiancé and grandson came for tea and when they left it was a bit emotional and then the evening kind of dragged but also went a bit too quickly!!! My daughter and I had a meltdown before bed and then composed ourselves. I still knew although I felt bad putting my family through all these emotions that I needed to do this – for the future…..
It did feel like it was my destiny and I feel that I now have control back over that destiny and I have stopped it in its tracks. It is better to try to stop the disease before it has a chance to take control of you – prevention is better than trying to cure.