Sisters Rachelle (39) and Corinne (35) Gebert knew their father’s mother had died from breast cancer but didn’t know they were at an increased risk of developing the disease until their father tested positive to the BRCA2 gene mutation. Rachelle was diagnosed with metastatic breast cancer in 2016, and Corinne had a preventative double mastectomy and reconstruction in late 2017.
Several years ago a distant cousin was diagnosed with breast cancer and tested positive for the BRCA2 genetic mutation. She advised her extended family including my father, whose mother had died of breast cancer at age 40. Dad decided to be tested, found he carried the defective gene and told our family during the Christmas of 2015.
Of course I was devastated and knowing the risks, Corinne and I decided to be tested. I was already in a high-risk screening program because I’d had mastitis while I was breastfeeding my eldest son, and my doctor recommended it as a result of my family history. It turned out I did have the BRCA2 gene mutation. I was ready to have a preventative mastectomy, but in August 2016 I was diagnosed with hormone receptor positive breast cancer which had already spread to my bones.
My breast cancer was metastatic from the beginning and there is no cure. I thought I was doing everything right to manage my risk, but it had spread so quickly that it was just too late. I am a realist and I know my time is limited but I am doing everything I can to give me as much time as possible and see my two gorgeous boys grow up. I have just turned 39 and am aiming for a big fiftieth party. Who knows?
Although BRCA mutations account for a small percentage of breast cancer diagnoses, it is important for everyone with a strong family history of breast cancer to get advice about testing. While a positive result signals danger, there are options to reduce your cancer risk back to that of the normal population.
Family testing is always emotional. Our Dad feels guilty, but there is nothing to feel bad about. Our two other siblings have also undergone testing with one result being negative and the other undergoing the process via the Familial Cancer Centre at the Peter MacCallum Cancer Centre in Melbourne. This involves counselling around considering being tested and preparing to find out a result. They in turn are totally supportive of me and there is nothing like family for comfort, compassion and understanding.
Discovering we carried the same gene mutation did bring Corinne and I closer. I know she just “gets” it – when I complain about treatment side effects or other cancer issues. I know she won’t pity me or get uncomfortable about how serious my diagnosis is.
In 2018 we created an Instagram account called @faultytittycommittee which we both share and post on together.
Through Instagram and sharing our stories, we want to educate and inform families like ours to know as much as possible about the options and serious impact and challenges of the BRCA2 mutated gene. If you have the risk of carrying a BRCA gene mutation then get tested early and talk to a specialist about your options.
I want people to read my story and see that I am an example that it is not always possible to ‘catch’ breast cancer early and get rid of it. You are taking a huge gamble when there is a strong family history or a genetic mutation.
Even though our paternal grandmother died young of breast cancer, I was not aware I carried any potential increased risk of breast and ovarian cancer. In fact, in my 20s I was told by a GP not to worry about breast cancer because it was on my Dad’s side – which was not the case.
When Rachelle and I found we both carried the mutation, we both knew we needed to take preventative action. But I was only 32. I thought I had time to meet my man, have kids, breastfeed them and then have the surgery.
Rachelle’s distressing metastatic diagnosis changed all that. Even though I knew all the information and facts regarding my risks, it was a personal moment where I realised it was real and happening now in our family.
I knew I had to act to reduce my risk immediately – for myself but also out of respect for Rachelle. She did everything right and didn’t have the choice that I did, and this plays on my mind heavily. So for both of us I had a nipple-sparing preventative double mastectomy with expanders in November 2017. Every day I am getting more comfortable living my new normal. I still swim, play golf and do push-ups even though my body feels a little awkward. When I first confronted my BRCA2 diagnosis I hated my breasts. I wouldn’t look at them – they were giving me too much angst. But now I am slowly adjusting to my new breasts.
I am young and I have a life in front of me. I still believe in my family dreams. I have frozen my eggs and hope one day to have kids! Most importantly the drama of these past years has given Rachelle and I a bond of shared love and compassion. We are there for each other in our differing dreams and challenges. It’s shown us what is important in life, and we’re both passionate about speaking up about BRCA gene mutations and the risk of developing cancer – even though putting yourself out there is scary for both of us!
You never know what may be ahead. And this experience has certainly shown me that I should do things now – don’t put them off. Because life is good!