After losing her younger sister and mother to cancer, Kate Joseph discovered she was at high risk of developing breast cancer herself. So she opted for a prophylactic mastectomy – surgery to remove both breasts. She talks us through this difficult decision…
I’ve just lost my nipples. Not a sentence I ever thought I’d say, and out of context perhaps a little bizarre. Allow me to fill you in.
The story of cancer begins to affect me personally at the age of 16 when my twin brother is diagnosed with Non-Hodgkins Lymphoma. I remember clearly feeling that my world was falling apart.
My rebellious teenage years came to an abrupt halt as the reality of what we were facing came into focus. I grew up pretty fast and, except for smoking spliffs out of the hospital windows, became relatively well behaved.
After a gruelling year, and only weeks after his treatment ends, we receive the next hit. My mum was diagnosed with ovarian cancer. As she begins to emerge from her own journey of surgical procedures and cancer treatments, I disappear on my first of many adventures, where I find comfort in the freedom of travel.
After I had found myself, or at least part of myself, I returned to the UK to begin university, but within weeks my mum’s cancer returned. Without missing a beat, I dropped out and moved back to London. Another round of chemo was on the cards, although only to prolong her life now by a few months, at best. She decided, at this point, it was quality, not quantity, and with a heavy heart the inevitable was accepted. My mum passed at 57, when my brother and I were 19 and Betsy, our sister, was just 16.
Slightly broken, I moved to Brighton, to embark on a new university course, and my rebellious teenage years returned with a vengeance. The following 10 years I spent on the move – travelling, getting involved with projects and searching for that sense of belonging that I had longed for since my mum had passed away. Fast forward to 2013, having just arrived back in India, I received a call from my brother explaining that Betsy had just been diagnosed with breast cancer. At the time she was living in New Zealand. Within hours I was on a flight to find her, with bleary eyes and vivid hospital memories.
Soon after Betsy’s initial diagnosis, she tested positive for the BRCA1 mutation – meaning that her cancer was genetic. Every woman on my mum’s side of the family had died early due to breast or ovarian cancer so this news did not exactly blow our minds.
Once Betsy’s treatment was behind us, and the oncologist had declared her cured, I decided to have the genetic test – purely to put my mind at ease. Research shows a 50/50 chance of passing it on to your kids. Even though I would have done anything to take it away from Betsy – with those statistics – I was in the clear.
Not quite. The clinical psychologist called me with the news. Her words filled the heavy air but somehow bypassed my cognition altogether. A little later I learnt that I now have an 87% risk of developing breast cancer and 40-50% of developing ovarian cancer. Just to put that into perspective, the average woman in the UK has a 5% risk of developing breast cancer, and roughly 2% chance of developing ovarian cancer.
Only a few weeks later Betsy’s cancer was in her liver and lungs. It was aggressive and before long had spread further to her brain. It progressed quickly and the last weeks spiralled. She lost the fight and I lost my sister.
Looking into having a prophylactic mastectomy…
The night she passed, I was hit by a wave of clarity. I am the first person in my family to be given the knowledge of this genetic mutation. The first person that has the power to act on that knowledge and do something that could stop me dying young.
The discussions of preventative surgery began, although at the time I was unequivocally certain that I was not having healthy parts of my body loped off. Wait until I get cancer, then deal with it. Surely…
BRCA specialists recommend that those who carry the mutation should undergo a bilateral mastectomy: the removal of all breast tissue and a bilateral salpingo-oophorectomy (yes, really) – removing ovaries and fallopian tubes, and all chances of carrying your own children.
I’m not scared of dying. I am happy to surrender when that time comes. I am, however, terrified of cancer. I have personally witnessed far too much of it in my life already. I cherish my body and the idea of mutilating it sent me sideways. There were no easy decisions in all of this. Stuck between a rock and a hard place – and clouded by grief.
I spent months gathering information, going up and down to London to meet consultants, doing research and talking to other BRCA sisters. I wanted to make decisions that were as informed as possible. I also wanted to put off facing what felt unavoidable.
I am only just emerging from the initial surgery – a bilateral mastectomy. The surgeons have replaced the breast tissue with silicone implants and attempted to conserve my nipples. During the many consultations I had prior to surgery, I was presented with options and decisions about reconstruction, but there was no getting away from the fact that I was losing my breasts. I now have no feeling in my chest and am unlikely to regain any sensation.
As I continue to heal physically, I am only too aware that the emotional repercussions of this kind of surgery are immense and impossible to double guess. Coming to terms with a different body looking back at you in the mirror challenges our understanding and perception of identity and self. However, with time I believe that I will build a different relationship with my body as I learn to accept and be proud of the scars that I carry.
From the get go, there was a certain amount of pressure from friends and family who are fearful of me facing the same fate as my mum and sister. The decisions that I have reached, however, are ones that I have had to get to in my own time, after my own research and my own reflections. Preventative surgery is no joke and there is no way of taking it back. These decisions have been the most challenging that I have ever had to make and they’re far from over yet.
If you – or someone you know – is in a similar position and would like to talk to Kate, please email firstname.lastname@example.org and we’ll put you in contact
Have you had a prophylactic mastectomy, and do you feel it was the right decision? If not, would you take this route if put in Kate’s position?