Knowledge is Power
How far would you go to change your destiny? If the odds were stacked against you and it seemed inevitable that you would miss being there to see your children or grandchildren grow up, would you take drastic measures to prevent it?
I am a BRCA1 gene carrier. I’m 1 in 400 people in the world that carry a BRCA gene, and 1 in 40 Ashkenazi Jewish people. BRCA1 and BRCA2 are gene mutations where carriers have up to 90% risk of developing breast cancer, and up to 60% risk of developing ovarian cancer before the age of 80.
I’m so fortunate to know that I have BRCA1, and to be able to take positive action. I hope my words will raise awareness of the genes and inspire others to be proactive. As you read this, please take a moment to think about your own family history, and whether you could be a gene carrier.
In my family, every generation on my mum’s side (that we are aware of) has had breast cancer and/or ovarian cancer, and the two generations above my mum passed away at the young age of 49. My incredibly brave mum has fought breast cancer twice, once at 30 and again at 46. She is one of the lucky ones who caught it early both times, and managed to get through the other side of some gruelling cancer treatment.
There are no words to describe how it feels watching a loved one suffer with the side effects of cancer treatment. The sickness, the hair loss, the anxiety. Anyone that goes through cancer is a hero in my eyes, whether they were lucky to survive it or not.
Mum discovered she had the gene at 40 and was advised to have a hysterectomy immediately to reduce her ovarian cancer risk. She decided at that time to continue to have screening and not undergo any risk reducing surgery for breast cancer. It inevitably returned at 46 and Mum decided to have a double mastectomy with reconstruction, ahead of her chemotherapy. Mum was the first woman on her side of the family to reach 50 years old. In 2009 she took part in a fashion show for Breast Cancer Care to help empower other women going through the same. She was sensational! I’m well aware how fortunate I am to have my mum here and I tell her this most days.
I was tested for the gene at 22. I remember the silence in the room after being told the news. The room may have spun briefly but I was completely prepared, in my mind I knew I had it. I’m not sure I even cried, I just needed a solution and I knew there were a few out there. So at 24 I decided to have a preventative double mastectomy with reconstruction which reduced my lifetime risk of breast cancer to the same as the general population.
I had been with my now husband Nick for a year when I had this done, he couldn’t have been more supportive which definitely helped with the decision process. I would have done it all, but having him by my side throughout has helped me share the weight of all the decisions. It is not a boob job, it is a major operation but in my mind it was a choice between a mastectomy, or remaining as a ticking time bomb!
Just as a side note, I had the preventative mastectomy quite a few years before Angelina Jolie discovered she had the gene and did the same, but they insist of putting her face on all the front covers.
I’m now 36, we are lucky enough to have two children aged four and six, and I am now tackling my risk of ovarian cancer. I am told my current risk at this [apparently] young age is only 5% but rises once I reach 40 and increases significantly overtime to 60%. That’s one in 20 for now, not low enough considering I have two young children to protect. The plan was to have a full hysterectomy immediately, but I have been advised that having this operation and forcing menopause in this sudden way before I’m 40 can have other serious health implications. I am constantly weighing up all my options and risks to determine the best possible time to have my ovaries removed. It’s such a difficult decision and one that haunts me regularly as I am terrified that the cancer diagnosis will come before I’ve had the chance to prevent it.
This year a new study came out called PROTECTOR. Current research suggests that many cases of ovarian cancer start in the fallopian tubes. By removing just the tubes, it may reduce my risk, or at least give me more time before I decide to have the full hysterectomy. So that’s what I’ve been up to over the past week. I had my operation on 19th November 2019. It was keyhole surgery, fairly straight forward and in and out of hospital in a day. Well that would have been the case if my bladder had woken up at the same time as me, but that’s a story for another day!
Recovery should be two weeks, but as I hobble around the house and allow everyone to wait on me and the children, I’ve decided to make best use of my time and share my story. As they say so much in the BRCA community, “Knowledge is Power” (yes there’s a whole community out there, check out @brcasisters on Instagram and the many supportive BRCA1/BRCA2 Facebook pages).
Our generation is so much luckier than the ones before us. Operation wounds are nothing compared to the fear, pain and sickness caused by cancer treatment. Science and research is continuing to improve and soon there may be some less invasive solutions to reducing risk. For now I will continue to do everything possible to protect myself and my family, and to raise awareness where I can.
A few extra points to note:
If one of your parents carry the faulty gene, you have 50% chance of inheriting it.
Men can carry the gene too and there are other cancers associated with it as well as Breast Cancer e.g Pancreatic and Prostate Cancer.
If you have a strong family history of cancer, you can go to your GP who will refer you for genetic testing if you are eligible and they agree that you are high risk.
These decisions are not taken lightly. You will have discussions with psychologists along the way who will discuss all the implications and help you to process all the information you are provided with and any worries that you have.
The Royal Marsden Hospital have published an incredibly useful and informative document called ‘A Beginner’s Guide to BRCA1 and BRCA2’. It includes information on how the genetic testing works, the specific cancers at risk, statistics including those for men, how to deal with diagnosis, risk reducing surgery, and advice on how to address the results with your children and family.