“But we’re not a cancer family”, my mum declared disbelievingly after she was diagnosed with breast cancer at the age of 54. High cholesterol? Perhaps. Dodgy lungs? A possibility. But cancer? No, That’s not our schtick.
Sadly, it turned out that cancer was our schtick. Twenty months later, after she had just turned the corner into grandparenthood, my mum passed away, having met just one of her eight grandchildren.
My mum’s cancer coincided with greater awareness of the BRCA1 and BRCA2 – gene mutations that significantly increase the chances of getting breast and ovarian cancer. (There is also a greater chance of men getting prostate, pancreatic and breast cancer, particularly if they carry the BRCA2.) Ironically, I remember writing about BRCA during my first stint at the JC in the late nineties. But despite my mum dying from breast cancer (but never getting tested for BRCA), I didn’t think it was something that applied to me. We’re not a BRCA family, I thought.
It was only on my brother’s insistence that I went for a BRCA test. By then, my husband and I were living in Tokyo with two small children.
Call it beshert, but when I went to ask my GP in Japan about it, thinking he would tell me to wait until I was next in the UK, he contacted me to say he had come across a professor at a nearby medical school, who was doing research into BRCA. I didn’t expect that a few weeks later, I would become the professor’s next case study.
Nothing had prepared me for the news that, in my lifetime, as a BRCA1 carrier, I had up to a 79 per cent chance of developing breast cancer and up to a 53 per cent chance of getting ovarian cancer. I remember walking out of the appointment in a state of mental chaos, my frenzied thinking at complete odds with the clarity of the cloudless January sky. Would I need to undergo a double mastectomy? When would I need to have my ovaries removed? What if we wanted another child? What if I wanted to breastfeed again? How could I not breastfeed a third child when I had nourished both my other babies this way? But what if another pregnancy would flood the body with cancer-causing hormones? And, what would my body actually look like after surgery?
I returned to the GP for an emotional appointment. If ever there was a case of being with the right doctor in the right place at the right time, this was it. “Last week, a Jewish, American patient came to see me, who told me she was a genetic counsellor,” he said.
So that was how I found myself spending several hours in a Tokyo Starbucks, crying to a lady I had never met before, but who was kindness personified, about how I felt about the prospect of having my breasts and ovaries removed – parts of my body which, at the time, I felt made me quintessentially a woman.
My husband and I discussed a third child, but in the end, decided that it was more important that I was here for our two real children rather than a third imagined one.
While living overseas, I went for regular anxiety-inducing scans and met with a surgeon during holidays in the UK, but it was only when we came back to London about a year and a half later that I started planning in earnest for surgery.
What gave me the final push was the “Angelina Jolie Effect” – the actress going public about having the BRCA and having a double prophylactic mastectomy, which would later be followed by an oophorectomy. My thinking was that if an A-list actress could undergo such radical surgery and still look like an A-list actress, then I could do it and still look like… me.
My wonderful breast surgeon ran through the options with me: I could either go for a total mastectomy or a nipple-sparing mastectomy followed by LD flap reconstruction, which involves creating a new breast out of tissue taken from your back or, more straightforwardly, silicone implants.
After explaining all the pros and cons, he looked at me with those serious, sympathetic eyes, reserved only for people in the medical world, and said: “Have you got any questions?”
“Could I go bigger please?” I asked.
How does one prepare for surgery which will remove, in a matter of hours, the breasts which, to my teenage self, seemed to have taken years to appear? Should I cover myself in plaster and make a cast of them to put on the mantlepiece? In the end, I settled for a selfie (or belfie?) the night before the surgery, which I think is still somewhere on my phone. It seems I wasn’t that sentimental about my breasts after all.
The surgeon managed to remove the tissue and do silicone reconstruction at the same time, and while I had some expected bruising and some (very controllable) pain, everything went according to plan – and, as requested, he topped me up. No, they don’t look exactly the same as before and they have lost some of their sensation – but I am happy with them – as is my husband, hence the print he bought for me (see above). While clothing that once revealed (a slight) cleavage was replaced with balcony tops, this was little sacrifice compared to the relief of reducing my chances of breast cancer in my lifetime by around 90 per cent.
At my 40th birthday celebration, I made a speech in which I compared myself to Angelina Jolie. “Like Angelina Jolie, my mother died at 56. Like Angelina, I gave birth to my first child at 30, and like Angelina, I have the BRCA 1 gene mutation.” Then [schmaltz alert], turning to my husband, I said: “However, unlike Angelina, I got to marry Brad Pitt.”
Looking back, I wonder if making light of my predicament was my way of coping with the impending loss of both my ovaries, and with that, my childbearing years.
I was also anxious about suddenly going from being (I assumed) still fertile into menopause, without the gradual transition most women go through.
Fortunately, I didn’t wake up from the surgery in the throes of a hot flush, but instead babbling to the poor nurse about war in Syria. As I was almost immediately put onto HRT, which I continue to be on to this day, I haven’t suffered terribly from overheating. That’s not to say my body hasn’t changed, but the effects of the menopause, such as sleeplessness and a lower sex drive, are far easier to remedy than cancer.
Ten years on from my double mastectomy and nearly seven years on from my oophorectomy, I have no regrets. I feel only lucky and grateful that my brother, on urging me to go for a test, realised that, not only were we a cancer family, but quite possibly a BRCA one too.
For more information about the NHS Jewish BRCA Testing Programme, go to jewishbrca.org
NHS Jewish BRCA Testing Programme Helpline:
020 3437 6001 or email: email@example.com
To read more about the NHS Jewish BRCA Testing Programme in the JC, go to: https://www.thejc.com/news/life-saving-screening-programme-launched-in-the-jewish-community-uo7r5lp0
To read about other people’s experiences of carrying a BRCA gene mutation, go to: