Staying Alive: One Woman's Story on Being a Breast Cancer Previvor and Survivor
As humans, we are naturally prone to safeguarding what is important to us. It’s how our species endures. We wear seatbelts, bicycle helmets, slather ourselves in hand sanitizer and we buy insurance policies of all kinds. After all, an ounce of prevention is worth a pound of cure.
My overactive imagination and belief that with enough foresight I can protect myself from calamities big and small are what make me push mugs of hot coffee as far away from the table edge as possible, repeatedly check that the doors and windows are locked each night and require my teenage kids to text me when they arrive at school each day.
I know why I am like this. When my mother died of breast cancer at 42, she left behind my dad, 20-year-old me and my four younger siblings. The youngest was 3 years old. My grandmother on my mother’s side died of breast and ovarian cancer at 49 and I realized that I was going to have to become vigilant if I wanted to change our family’s health narrative.
I was 21 when I first went to see a breast specialist for annual checkups and 30 when I had my first mammogram. I had to fight for the right to have a mammogram because the protocol at the time was not offer them to women under 40—the age at which my mom was diagnosed. I’d have been long dead by 40.
By then I was married with 2 kids and I’d seen some promising news about ways that genetics could play a powerful role in cancer prevention. It was then that I first heard the term BRCA1, the name of the gene which, when mutated, can cause breast cancer. I had zero doubt that I was a BRCA1 carrier and a simple blood test confirmed that. Being a carrier increased my chances of developing breast cancer by 87% and ovarian cancer by 60%. Not to mention my strong family history of cancer.
So I went for regular doctor’s visits, mammograms, ultrasounds and even an MRI. Nothing was going to sneak past my 24/7 security system.
Around this time, a close friend who also had a family history of breast cancer and was a BRCA carrier opted to have a preventative double mastectomy, bringing her chances of a cancer diagnoses down to 5%- a much more palatable number.
That was all the data I needed. It was the most effective form of breast cancer prevention available to me and I wanted in. I desperately wanted to lift the constantly looming threat to my life and to set a positive example for my 4 younger siblings, to show them that nothing was too extreme if it meant staying alive.
Remember when Angelia Jolie announced to the world that she’d had a preventative double mastectomy because of her family history? She received universal praise for going public with her story. Well, that was three years AFTER my surgery. Only I had way less press coverage. And a very different outcome to hers.
It was November 2008 and my kids were 7, 5, 3 and 1. I might have waited another six months, maybe a year- after all, I was only 34. But our family had plans to move from New Jersey to the UK that summer for my husband’s job and I wanted to be back to myself by then, the entire ordeal of a double mastectomy with reconstruction well behind me. My reconstructed breasts would be fashioned from own stomach fat, something I had plenty of after giving birth four times in six years so in addition to the health benefits of the procedure, I’d get a free tummy tuck. I envisioned myself arriving in London with perky boobs and a flat stomach.
I woke up from the nine-hour procedure feeling a lightness that I’d never known before. I’d done it. I’d beaten breast cancer at its own game.
This euphoria lasted six days. Sitting in my recliner chair at home trying to find a comfortable position amidst my drains, sutures and bandages I heard the phone ring.
It was my surgeon.
It was Thanksgiving eve.
I naively thought “Oh, how lovely of her to interrupt her turkey-basting and hot apple cider-drinking to check on me! This is the gold standard of care, how lucky am I!”
It was only when I heard her say the word “cancer” that my reverie was finally broken and, in shock, I didn’t hear much after that. My pathology had revealed two tiny but fast-moving cancers in one breast. Unlike in Angelina’s case, preventative surgery had become life-saving surgery.
Four weeks later I was back on an operating table, this time to check that my nodes were clear, and, at first glance, they seemed to be just that. When the pathology came back, it revealed micro-metastasis in 2 nodes; cancer so small that they could count the number of cells; that number was six.
In the spirit of extreme prevention and finishing what I started, I was advised to have 8 preventative rounds of chemo followed by an oophorectomy which activated my menopause at 35. I pulled out my mother’s old medical files which I’d perused hundreds of times before, but only now recognized the names of the toxic treatments she’d received. Seventeen years later, I had the exact same cocktail of drugs coursing through my veins.
I was furious that despite my best efforts, I had to endure exactly what I set out to avoid.
“What’s the difference between her treatment and mine!??” I raged to my husband one time from my chemo chair.
“The difference,” he observed, “is that unlike her, you get to live.”
Ok. He had me there.
Today I proudly tell anyone who will listen that I am both a Pre-vivor AND a survivor. In fact I identify more as someone who set out to be preventative and nip cancer in the bud than I do as a survivor, despite the treatment and side effects I had to suffer through. In my mind, the chemo and oophorectomy were just as preventative as the original double mastectomy. At each juncture, I CHOSE to jump the next hurdle.
In a few weeks I’ll celebrate my twelve-year Surgiversary; twelve years since I worked up the nerve to get onto that operating table and alter the course of my family history.
I’ve become a breast health advocate and I receive frequent messages from people asking if I’d speak to a sister, aunt, cousin, friend. They are coming to me not for medical advice, but for my experience, for the truth that the doctors don’t really know about first hand. Because the doctors can tell them how to stay alive, but not how to anchor a wig to a bald head during a windstorm (sports tape).
And they come to me for levity, for jokes to make the unbearable less so. My favorite way to help is to make people laugh; to laugh is to forget if only for a minute.
I’m proud that my encounter served as a wakeup call to my younger sisters, two of whom were motivated to have gene testing and subsequent mastectomies of their own. In that way, I’ve kept the promise I made to my mother as she lay dying- that I’d always do my best to look out for my siblings.
While I don’t have the star power to reach the masses like Angelina Jolie does, I’ve seen the lifesaving impact that sharing my story has had, even if only on one person at a time.
Gila Pfeffer
Hi! I’m Gila Pfeffer (rhymes with Mila) and I’m an American writer and blogger raising four teenagers in the UK. I write relatable stories about life with teens, navigating my forties and, as an 11-year breast cancer pre-vivor and survivor, I also shed some light on what it was like to undergo breast cancer treatment with 4 young children. Spoiler alert: it was really hard. But it gave me invaluable perspective and a humor which I infuse into whatever I write.
I regularly promote breast cancer awareness and prevention so if you’d like a monthly reminder to check yourself, please follow me on Instagram and look out for my “Feel It On The First” posts at the start of each month.
I co-authored a book about being the parent of teenagers called I Just Want To Hang Out With You, part of a New York Times best-selling series. Find more of my work on my website: https://the-mom-who-knew-too-much.com.
You can also find me on:
Instagram, Twitter, Tik Tok, & Facebook
I’m currently at work on my first memoir about how to persevere when worst comes to worst. (Spoiler alert: the answer is "by making jokes".)