From Curious Click to Cherry Blossoms: My BRCA1 Previvor Story
- Surviving Breast Cancer
- 10 hours ago
- 7 min read
By Debbie Lesser
Listen to Debbie on the SBC podcast, Breast Cancer Conversations:
Have you ever heard of The Butterfly Effect?
It’s the idea that something as small as the flutter of a butterfly’s wing can ultimately cause a typhoon halfway around the world. That theory pretty much sums up how I ended up here, as a BRCA1 mutation-positive previvor with cherry blossoms tattooed across my chest.
Let me back up.
In 2013, I was a full-time medical sign language interpreter. I spent my days (and nights... and weekends) interpreting for doctors and hospitals across the country via video - picture Zoom, but with more emergencies and less “can you hear me now?”
I’ve always been a curious person. A bit of a medical nerd, if you will. So, when I was accepted into a highly competitive medical interpreter training program (only 15 of us were chosen nationwide), I jumped at the opportunity.
One of the speakers in that program was a genetic counselor. Her presentation was fascinating. Afterward, I thanked her, and she casually mentioned I could take an at-home DNA test to learn about my ancestry and health risks.
So, obviously, I ordered one for myself, my husband... and our dogs. (Don’t judge… they needed to know where they came from, too.)
And you better believe I spat in that little tube the second I got home.
And Then… The Results
A few weeks later, the results were in. I was fully expecting to be Scottish (thanks to reading the entire Outlander series). But, plot twist: I was actually Polish, Russian, and Ukrainian. Which, honestly, made way more sense given my carb preferences.
Turns out, I’m almost 100% Ashkenazi Jewish. Cool.
Fun (and not-so-fun) fact: being of Ashkenazi Jewish descent puts you in a high-risk category for BRCA mutations. If that’s your background, get tested! Seriously… it’s a tiny tube of spit and a whole lot of peace of mind.
And then I saw it - BRCA1 gene mutation. I wasn’t alarmed. I thought: these at-home DNA tests are cheap, probably full of false positives, and besides, no one in my family had breast or ovarian cancer. So, I casually mentioned it at my next mammogram appointment. My doctor agreed it was probably bogus but offered to refer me to a genetic counselor just in case.
I said yes, not because I was worried, but because I’d never seen genetic mapping done before. I thought, “Hey, this will be fun and educational.” (I know, I’m a riot at parties.)
At the appointment, I told the counselor, “I’m sure this is nothing, I just wanted to see how you do your thing.” She asked if I was Jewish (check) and if there was any cancer in the family.
The only thing I could think of was my paternal grandfather, who died of pancreatic cancer in his late 70s. But again, nothing too alarming, right?
Except... wrong. The genetic counselor recommended that I undergo additional testing to confirm the direct-to-consumer results, which indicated I did indeed have the BRCA1 mutation.
Now, here’s the thing: everyone has BRCA1 and BRCA2 genes. They’re like your body’s personal cancer security team, meant to suppress tumor growth. But when there’s a mutation… it’s like firing the security team and leaving the door wide open.
Suddenly, I wasn’t playing with house odds anymore; I was holding a losing hand. There was more than 60% chance I’d get breast cancer and about 39-58% chance of ovarian cancer. Not exactly the kind of gamble anyone wants to take, and definitely not the kind of lottery you want to win.
I was 45. No family history. No warning. Just a wildly inconvenient mutation silently passed down through my father’s side; a family line I barely knew. My dad had no siblings, was distant from extended family, and both his parents had already passed. The counselor suspected the “silent” gene mutation came from him.
The Family Web
My mother is one of five siblings, four of them women. Still, no history of breast or ovarian cancer there. I, however, have five sisters (my dad has two girls from each of his three marriages… yes, it’s like a mini-series). I also have two daughters.
I told everyone.
My older sister, who has developmental disabilities, tested negative …huge relief. I’m the second oldest. The next two sisters tested positive. The last two have never spoken to me about it (families are complicated, right?).
When my daughters turned 18, they wanted to get tested. They’re both BRCA1 mutation-positive. That moment hit me hard – not just as a woman, but as a mom.
The Choices We Make
After confirming my DNA results through a second (far more expensive) clinical test – not covered by my insurance, of course – I began the slow, messy journey of risk management.
First up: full hysterectomy. Ovarian cancer is nearly impossible to detect early and has a 51.6% 5-year relative survival rate. I was done having kids, so this was a no-brainer. The surgery went smoothly. I was up and walking quickly. And thanks to a low-dose estrogen patch, menopause didn’t completely knock me flat.
But deciding whether to have a mastectomy? That was harder.
At first, I said no. I went with “watchful waiting” – alternating mammograms and MRIs every six months. I figured I’d cross the mastectomy bridge if I got cancer.
Then one day, at a routine mammogram, my breast specialist (the same one who agreed that the original test was “probably a false positive”) noticed my estrogen patch and said, “You need to take that thing off or get a mastectomy.”
Then she hit me with this zinger:
“Do you want your mastectomy with a side of chemo or not?”
Surgery, Setbacks, and Strength
So, on June 1, 2016, at 48 years old, I underwent a nipple-sparing prophylactic bilateral mastectomy with direct-to-implant reconstruction using textured teardrop implants (yes, that’s a mouthful).
Recovery was… let’s just say “challenging.” I couldn’t lie flat for two weeks because gravity hurt. I lived in a recliner. About three weeks after surgery, my right nipple developed necrosis and required an emergency surgery. (I now refer to it as my “wonky nipple.”)
Three rounds of fat grafting followed.
Then, in 2019, my annual routine MRI showed my left implant had ruptured. Around the same time, those very implants were banned worldwide for causing a rare lymphoma. So, hey, silver lining? That rupture may have saved my life.
In July 2019, I had implant exchange surgery and, you guessed it, more fat grafting.
But you know what? It’s been smooth sailing ever since.
No cancer. Just scars, gratitude, and a new perspective.
The Cherry Blossoms
To reclaim something beautiful from all this - the surgeries, the fear, the lost sensation, the hard choices - I got a tattoo that wraps from my right breast up to my shoulder. Cherry blossoms.
They symbolize the fragility and brilliance of life… how it blooms gloriously and ends too soon. They’re a reminder to live in the present. To bloom fully, even if briefly. To be grateful. Life is short and stunning, so pay attention.
Previvor, Not Survivor… But Still Impacted
Previvor means “a survivor of a predisposition to cancer.” In my case, it goes beyond carrying the gene mutation. It’s facing your odds and choosing to fight preemptively. And yes, some people have actually said to me, “At least you got a boob job out of it!”
Okay. Deep breath.
Let me put it this way:
A boob job is like remodeling your kitchen.
A prophylactic mastectomy? That’s like evacuating ahead of a Category 5 hurricane because you live on the coast (Hi, I’m from Florida). You demolish the house before the storm hits, rebuild it from the foundation up, and live every day knowing you made the right call.
It doesn’t look the same. It doesn’t feel the same. But I’m grateful for the choice and for my life.
No, I didn’t “suffer” the way many cancer survivors have. I didn’t lose my hair or vomit my way through chemo. I didn’t have to stare down a terrifying diagnosis or wait for a doctor to tell me the odds. But I did make gut-wrenching, body-altering, emotionally exhausting, counterintuitive decisions – choosing to remove healthy body parts in order to avoid that suffering. That takes a whole different kind of strength – the kind that whispers, just because you’re not sick yet doesn’t mean you sit and wait to be.
And through it all, my daughters got front row seats. They didn’t just watch their mom navigate risk; they watched her flip the script. They’ve seen strength that doesn’t wear a cape but walks into a surgical consult with a spreadsheet. They’ve learned that being proactive isn’t overreacting. It’s smart. It’s fierce. It’s survival with a strategy. They’ve learned to be vigilant, stay informed, and trust themselves to make decisions that are right for them.
People have asked, “Why would you go through all of that when you might never even get cancer?”
And my answer? Ask a breast cancer survivor if they’d have jumped at the chance to prevent it all… the chemo, the surgeries, the fear. I don’t need a crystal ball to know what most of them would say.
The Final Flutter
All of this, every test, every decision, every scar, traces back to a single conversation I almost didn’t have at a training I almost didn’t attend. And that traces back to a woman named Dr. Mary-Claire King, who almost didn’t get on a flight to present her BRCA research to the NIH in 1981.
She got on the plane. She got the grant. The rest is world-changing science.
I wrote to her once and thanked her. Because her butterfly wings flapped hard enough to reach me decades later.
We are all part of someone’s Butterfly Effect.
You reading this might be part of someone else’s. And if sharing my story helps even one person take action, to get tested, talk to their doctor, or just pay closer attention, then maybe my wings are flapping too.
Read More:
On the Podcast: Breast Cancer Conversations
23andMe Found my BRCA Mutation with Debbie Lesser
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