My name is Monique and I am 51 years old.
I found out that I lived with the BRCA1 gene at the age of 46, (five years ago) when I had genetic testing done at the Royal Women’s and Brisbane Hospital.
I inherited the gene from my mother’s side of the family. My mother and her brother (my uncle) are also positive to the gene. My aunt (my mother’s younger sister) recently died of cancer. Their father - my grandfather - died of stomach cancer years earlier. Through genetic testing we have found that it was my grandfather who was the BRCA1 gene carrier.
A year after I discovered I had the BRCA1 gene, I had a full hysterectomy with ovary and fallopian tube removal. This was to remove the risk of developing ovarian cancer, which is linked to those with the gene mutation. The following year I had a double bilateral mastectomy with expanders. Although I initially didn’t want expanders, my doctor suggested I have these inserted following the mastectomy. I agreed, despite my misgivings. (The expanders are empty “sacks” that are inserted below the pectoral muscles, and are regularly injected with saline every few weeks. The purpose of this is to stretch the skin and muscles to make room for permanent silicone implants).
Four months after the expanders were inserted, and after numerous visits to the hospital to have saline injected into my expanders, I returned to the surgeon to have my regular saline injections, as part of the reconstruction of my breasts. My surgeon was unavailable on this day, so the registrar was going to be doing the saline. When the registrar placed the needle inside the expander ‘pocket,’ they injected the wrong part of the expander, causing it to leak fluid into my chest cavity. This meant I had to have another operation in order to have a new expander placed. Each operation caused a seroma [a build-up of fluid which can be painful] that had to be drained to prevent infection. These surgeries - and the entire process - were exhausting, both physically and emotionally.
I needed to continue to have saline injected into my expanders for another few months before my surgeons could insert my permanent silicone implants (surgery number four). Following this surgery I was relieved, but this was short-lived as the implants did not sit right on my chest. They were painful when I lay on my side in bed. After consultation, I had the implants removed in yet another operation. The surgeon found that my body was rejecting the silicone implants.
Five operations later and the scars are still evident on my body. I’m glad I had the implants removed, but I was initially terribly upset at how my body looked. My skin was loose from where the breast tissue had been expanded; there were loads of scars and “flabby bits.” To me, I looked deformed
Last November, I had a DIEP flap (DIEP stands for deep inferior epigastric perforators). This was after consultation with Dr Daryl Dunn who recommended this reconstruction. It involved using my own stomach fat and blood vessels to create new breasts, so there was no need for expanders or implants. The surgery took around ten hours. Almost immediately, despite the initial pain, I felt better. I felt like myself – a woman – again. I’m so glad I went ahead with the reconstruction, despite my misgivings based on the previous five operations. I thought I was okay about my ‘flat’ appearance, but having breasts again has restored my confidence.
I heard about Pink Hope through the Royal Women’s Brisbane Hospital, and also through social media, namely Facebook. WBH hospital and Facebook. I’m now an avid follower of their social media – Facebook and Instagram – and regularly share their posts to help inform and help others. I tell my friends and family about Pink Hope, how it can educate people and how they are helping me to tell my story.
I am healing nicely, six months down the track. There is still tenderness in some areas and numbness where my scarring is, although I’ve been told this will fade. In fact, I’ve even grown some tiny black hairs on the bottom of my boobs. In the past, this would not have pleased me, but today? I feel fantastic