My journey with BRCA was a strange thing. My mission to get testing seemed to take forever and it started to feel like I might never know whether I carried the cancer gene. So when the news finally came that I had tested positive as a carrier of the BRCA2 gene, I should have been prepared, and I thought I was, but I wasn’t at all. Hearing the words from Genetics NZ left me feeling numb.
The first few days after finding out I was overwhelmed thinking about what it would mean for me and my son. It wasn’t just the worry of surgery it was also the practical things like -how long would I need to take off work? And who would look after Carlo? And what were the risks of the operation? Would I end up with breasts and nipples?
I had so many questions, and I realized that I had been so focused on trying to get testing that I hadn’t really thought about the next steps. St Marks Breast Clinic was helpful. The first thing they did was give me a folder of reading material. I was put under the care of Vanessa Blair, an Oncologist that specializes in ‘high risk’ cases, with a special interest in BRCA. She assesed my unique situation taking into consideration my family history and BRCA2 genetics and explained that my chance of breast cancer was extremely high. The thing that most shocked me was that BRCA cancers are most likey to strike at a younger age – they are not an older persons cancer.
In April 2016 I had a bilateral mastectoy at Auckland Surgical Hospital, under the care of St Marks.
This photo was taken the night before my operation. My girlfriend Delia came over to help calm my nerves. I told her what was planned with the surgery, and we celebrated my breasts and all the great memories they had given me. ‘Bye Bye Boobies’ we said. And although I was certain about my decision to remove my breasts, I was also apprehensive about the surgeries and procedures to come.
The night before my double Mastectomy I didn’t get much sleep. Although I’m usually so calm under pressure, I wasn’t at all, it was unsettling. The morning of my operation I felt surprisingly OK. I said goodbye to Carlo and dropped him at his daycare to keep up our normal routine – then went on to Auckland Surgical Hospital.
My Plastic Surgeon Michelle Locke was very calming and ran through the procedure with me again. Dr Blair would remove my breast tissue and Dr Locke would work with her to put in my expanders (temporary pockets that get filled up with saline injections over 3 months).
The operation was a success. I was under for more than 5 hours. But everything had gone as planned. The best news was that they had been able to do the nipple sparing procedure – I had kept my nipples! The first thing I said when I woke up was “I’m so glad they’re gone.” I was bruised, swollen and sore – but relieved.
It’s hard to really make the weeks that followed the operation sound great. I was very sore for the first 10 days and so frustrated not to be able to do all the things I wanted to do. It was over a week before I could make a cup of tea and even longer until I could really tuck my son into bed. But at no point did I regret the operation. I just looked forward to being fit and able again – and after two to three weeks I started to feel like myself.
Only a couple of weeks after my operation I had my first expansion. The process was like something out of a sci-fi movie. Dr Locke explained I had metal ports inside the expander pockets, and started by using a magnet to find the point to inject. She used a pen to mark the exact spot. Then she injected me with a long needle that was attached with a curly tube to a syringe full of fluid. Gradually she pushed 100 mils of saline into my breast and it was like watching a balloon slowly inflate. I wish I had a picture to show you with just one side inflated – the difference was quite amazing.
This photo was 4 weeks after my operation with 200 mils of saline in each breast, which is about an A cup. The inflation process takes approximately 3 – 4 months and during that time I kept having the inflations until I was back to my normal C cup size. The inflations feel really tight and they are generally uncomfortable. But there is light at the end of the tunnel! Once the inflation process is complete the next operation is scheduled to have the silicones implanted. Watch this space…