‘I discovered I had breast cancer after I had surgery to prevent it’

It is not often that you meet someone for the first time and immediately launch into a conversation about boobs. As a fellow carrier of the BRCA gene mutation, which is more prevalent in the Jewish community and vastly increases breast and ovarian cancer risk, before we have even ordered coffee, I have told the writer and essayist all about my own “cancer story”. It ended with preventative surgery, as it thankfully does for most people who choose that route.

But for Gila, as she was recovering from prophylactic surgery 16 years ago, her own “cancer story” was, as she puts it, “just starting”. 

Shortly after coming home from the hospital, the New Yorker, who now lives in Hendon, received a call from her surgeon. “It was Thanksgiving eve. I thought my surgeon was calling to check how I was doing, but it was actually to say that they had found early, but aggressive cancer in one breast.”

Her reaction was shock, but also a huge sense of betrayal. “By whom, I don’t know. I just thought: ‘I did everything right. I went to the furthest extreme. I had major surgery to remove my breasts, I had reconstruction from my stomach. All I had to do now was heal.’ But with this piece of information, it was very clear that this was just starting.”

At the same time, the diagnosis, provided “a tiny glimmer, which grew later, into validation” against the naysayers. “Anyone who had said: ‘Why would you meddle with your body? Why would you go to such extremes? That is why.’”

The news of the cancer diagnosis also gave her the impetus to write her first book. Nearly departed is a beautifully crafted memoir, deeply moving and, at times, very funny. It begins with the discovery of her own mother’s breast cancer and tragically premature death, to Gila finding out she is a BRCA carrier, the loss of her father to colon cancer when Gila was only 30, preventative surgeries and her own battle against breast cancer – and ultimate survival. Woven into all of this is the love story between Gila and her husband, Phil, with whom she shares four children.

Getting her experience down on paper was a way of “taking back power and agency. I thought: ‘How can I take what happened to me and morph it into something powerful?’”

Having control over her destiny was something that Gila had already decided on at the age of 20 when she was looking after her mother near the end of her life. “She asked me to change the dressing of some wounds on her back. It was as horrible as anyone could imagine, and I remember having the thought: ‘I need to prevent this from happening to me.’”

It was when she was pregnant with her third child, now 19, that she underwent a BRCA test. The positive result didn’t come as surprise. “But even if it had been negative, I still would have gone for this preventative double mastectomy as, for me, that family history was so strong. (Her maternal grandmother also died from breast cancer.) 

"I am a very preventative person. If your tea was at the edge of this table, without thinking, I would move it.” (Interestingly, the front cover illustration of her book is of a cracked mug held together by elastic bands and duct tape.)

The shock of her cancer diagnosis was compounded by the side effects of the chemotherapy and she writes about the lengths she went to in order to hide her baldness from her children, her husband – and even herself, wearing a beanie in bed and a cap in the shower for fear one of her kids would just barge in.

Today, she says: “I thought that If I could just control the narrative of what I look like, if I could not leave them with that memory seared into their brains in the way I had memories of my mother seared into mine.”

She rails against the seeming inability of the medical world to be able to produce chemotherapy which doesn’t cause hair loss. “The psychological impact [of losing your hair] is tremendous.”

After Gila stopped chemotherapy, she waited three years for her hair to reach shoulder length, and when it did, she celebrated by bleaching a strip of it. “As I became a more active breast cancer prevention advocate, I realised that pink would be a better symbol (and more fun still).” Over ten years later, she still has a stripe of bubblegum pink hair.

As part of her quest to increase breast awareness, some years ago, she launched Feel it on the First, a social media campaign to encourage women to prioritise their breast health, whether that means doing a self-exam, scheduling a screening or talking to a doctor about their risk profile. She invites people to send her images which remind them of boobs “to make people laugh and view breast cancer prevention through a less scary lens”.

A comment that family, friends and doctors frequently made to her after her cancer diagnosis was “You saved your own life”. Without the decison to undergo surgery, the cancer was unlikely to have been discovered until a much later and more advanced stage.

But Gila, who grew up in an Orthodox family and is an observant Jew, believes that there were other forces at play. “I don’t want to get corny and cheesy, but I’m just a person. Of course I don’t have the power to do such things, but God gave me the power. Whatever assistance he put in place, the fact that we decided to move to London for Phil’s job, that’s what sped up the decision to have the surgery when I had it.”

The relocation to London in August 2009 – more specifically to Hendon –  three months after her treatment and two months after her oophorectomy – led them to the Ner Yisrael congregation, which Gila describes as “the most welcoming community”. Originally, they had planned to live in the UK for three years, but the strong ties they have built up over the years is “why we’re still here”.

A few months ago, she turned 50, the first woman on her mother’s side to reach that milestone in four generations. She ended up celebrating her birthday at her two-year-old niece’s nursery in Tel Aviv as she was visiting family in Israel.The decision to celebrate her half century among toddlers was “about being with this continuation of the generations”.

Between herself and her four siblings, they have “keinehora” 21 children. “Even though we have no grandparents – I am the oldest living member of our entire family – we are rebuilding. We can’t move backwards, so we’re moving forwards.”

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Nearly Departed - a Memoir: Adventures in Loss, Cancer, and Other Inconveniences

By Gila Pfeffer

Publisher: The Experiment

@gilapfeffer

jewishbrca.org