Getting it done!

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.

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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.

 

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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).

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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.

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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.

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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…

 

STORY ON STUFF:   http://www.stuff.co.nz/life-style/well-good/inspire-me/79422634/Mum-and-socialite-Anna-Jobsz-undergoes-double-mastectomy-for-her-son

What is BRCA?

The first time I heard about the BRCA cancer gene it was a news story on TV about Angelina Jolie. I couldn’t believe she had undergone a preventative double mastectomy, it was the first time I’d ever heard of anyone doing such a thing.

Soon after I read this story that Angelina published in the New York Times: http://www.nytimes.com/2013/05/14/opinion/my-medical-choice.html?_r=0

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Little did I realize that my own BRCA cancer odds were so similar to Angelina’s.

It took me some time to get testing approved and completed through Genetics NZ – which I spoke about on One News and TV3 Story. Eventually in January this year I was confirmed to carry the BRCA2 gene.

http://www.newshub.co.nz/tvshows/story/finding-out-your-cancer-risk-a-hard-fought-battle-2016021119

One of the first websites I checked out was ‘The Gift Of Knowledge’, run by Nicola, a kiwi woman who carries the BRCA gene. There is plenty of information here about BRCA and support networks available  http://www.thegiftofknowledge.co.nz

“Hereditary breast and ovarian cancer is caused by mutations in two genes called BRCA1 and BRCA2. These genes were discovered in 1994-1995 (the acronym BRCA comes from BReast CAncer one or BReast CAncer two). Normally these genes act like brakes that help stop abnormal cell growth in the breasts and ovaries. However errors (called mutations) can occur in these BRCA genes, and if a woman has inherited a mutation in one of these genes she has a high chance of developing breast and/or ovarian cancer. Women who carry a mutation in one of these genes may have a 50-85% lifetime risk of developing breast cancer and a 20-40% lifetime risk of developing ovarian cancer. About 1 in every 400 people in our population carries a mutation in BRCA1 or BRCA2, and less than 5% of all breast and ovarian cancers can be explained by a BRCA mutation.”<The Gift Of Knowledge>

Also helpful was good old Wikipedia  https://en.wikipedia.org/wiki/BRCA1

Something I didn’t initially understand is that the BRCA gene can be passed from father to daughter. I had suspected I might have BRCA gene on my mothers side of the family, but it was actually passed to me from my father. Similarly I did not realize that men could develop  Breast Cancer. Last year my uncle (my father’s brother) had his breast removed due to Breast Cancer and was eventually confirmed to have the family BRCA2 gene.

Here is a recent story in the Washington post that relates to male BRCA gene Breast Cancer  https://www.washingtonpost.com/news/to-your-health/wp/2016/05/15/why-more-men-should-be-tested-for-breast-cancer-gene-mutations/

Angelina Jolie eventually went on to have her ovaries removed to reduce her chance of Ovarian Cancer. Identifying Ovarian Cancer is very difficult and it is often recommended to BRCA carriers to have their ovaries removed by age 40.

I also found some good information on this site about what to look for if you think your family might carry the BRCA gene.

http://thebreastcentre.co.nz/breast-cancer/genetic-testing.aspx

I hope this info has been helpful, please let me know if you have any feedback or other links you’d like to post.