A Love Letter to Our Bodies (And the Village That Puts Them Back Together)
On prophylactic mastectomies, self-advocacy, and healing
Hi there,
Before we start, I want to remind you of this special event I am co-hosting to benefit CaringKind, a trusted partner in brain health, supporting families and individuals impacted by Alzheimer’s and related dementia.
I’m so honored to have been selected to join 100 WOMEN OF IMPACT, convened by CaringKind, a national movement of women leaders committed to shaping the future of brain health and well-being. Guided by shared purpose and compassion, we champion research that confirms Alzheimer’s and related dementia risk can be significantly reduced by up to 40%.
Please join me alongside my co-host’s and fellow Women Of Impact Meredith Burns, Melissa Breitbart, Jan Planit, and Amber Rae on Friday, March 27th from 12:30–2:30 PM at Veronica Beard in Southampton. I hope to see you there!
OK, onwards to this week’s newsletter!
PS: Pro-tip: if you prefer audio, you can listen to this newsletter on Substack. Just find the play button on the top right corner!
Some of the statistics cited in this newsletter are based on published medical research available at the time of writing, and others were shared with me with my doctor in 2018. Please consult your own healthcare team for the most current information and personalized medical advice. This is a personal story, not medical guidance.
You may remember back in 2013, when Angelina Jolie wrote an op-ed at the of The New York Times titled “My Medical Choice,” revealing that she carried the BRCA1 gene mutation. That gave her an estimated 87% risk of breast cancer and a 50% risk of ovarian cancer, and she shared she had already undergone a preventive double mastectomy. Two years later, she followed with the removal of her ovaries and fallopian tubes.
Referrals for genetic counseling doubled. BRCA testing surged 64%. Women who had been quietly terrified suddenly had permission to ask more questions, and choose. They called it the “Angelina Effect.”
Today, prophylactic mastectomies are far more common than they were in 2013. But it’s major surgery, and a deeply personal decision, and it requires more information than most of us are given when we need it most.
I know, because I lived it.
The Phone Call
In 2018, I was diagnosed with breast cancer. My former doctor called me and simply said “I’m sorry, you have breast cancer. Youn need to find a surgeon and an oncologist, so get your pathology reports sent over. I have no more information.” (I also wrote about this here). Now you know why she is no longer my doctor.
I didn’t even know there was more than one type of breast cancer. I thought cancer was cancer, the big, terrifying, C word. I hung up the phone and the only thought in my mind, on an absolute loop, was: I can’t die. I need to be here for my kids.
What followed was two weeks of bureaucratic chaos. Calling the hospital to get pathology reports sent to Memorial Sloan Kettering (a full-time job in itself), then my surgeon requesting an entirely new pathology analysis to confirm the diagnosis. Two weeks of not knowing if I was facing something survivable or something catastrophic was torture.
Thankfully, my cancer was caught in the earliest form, and it was non-invasive, encapsulated. The five-year survival rate was over 99%. I exhaled for the first time in fourteen days.
“It’s Not Necessary”. Why I Did It Anyway.
My instinct from the start was to have a mastectomy. Just get rid of it. But my surgeon, rightly so (medically speaking), told me it wasn’t necessary. She walked me through the statistics: the 10-year survival rate was 98% regardless of treatment approach after surgery. The recurrence rate after lumpectomy and radiation was from 5 to 15% in 10 years. The annual risk of developing cancer in the other breast was about roughly 5-6% at 10 years, about 10% over 25 years.
(These are the statistics she shared with me then; current numbers may vary.)
The numbers seemed to be in my favor. I was distraught, exhausted from the diagnostic saga, and just wanted someone to get the cancer out of me so I could get on with my life. So we did a lumpectomy and radiation. When radiation ended, I was relieved and got right back to my life.
But here’s what no one told me : when the treatment ends, the anxiety begins. At least for me, it did.
Every year, I went for my screening, and it was always terrifying. Multiple times I had scares that required additional biopsies, on both breasts. Then, two years ago, I had to have a small spot removed that was deemed very high-risk. Doctors are excellent during treatment, but they don’t prepare you for the emotional aftermath, the yearly dread, and the constant vigilance. There is a heavy, invisible weight of constantly living on alert.
Sure, I was lucky it was caught early, and the statistics were on my side. But survival rate is different than recurrence rate - who wants to go through this again, even if we have high chances of surviving it??? If it came back, it could come back invasive. And then I’d be looking at a whole different battle, like chemo, and maybe a far more uncertain outcome. And though the statistics of survival are “good”, what if I fell on the “bad side”? I’m already an anxious person, and living in fear, and waiting for the other shoe to drop was eroding my quality of life.
So two years ago, I made my decision: double mastectomy. I went back to my doctor, who once again gently and professionally told me it wasn’t necessary. This time, I pushed back. “I know the statistics, but this is about my mental health. This is about my quality of life. I can’t keep living like this.”
She relented. And last January, I went through with it.
Listen, I’m not here to convince you to do it. This is a huge decision and it must be done carefully (it took me 7 years to do it). But if you take one thing from my story, let it be this: listen to the doctors and do your research. Ask other doctors and people you know who went through it. And then if you want to pursue a different route, you are allowed to advocate for yourself, even when the data says you’re fine. Your mental health counts too. Your peace of mind is a legitimate medical concern. You know your body and your limits better than anyone else.
If You’re Considering This: Implants vs. DIEP Flap
I want to share what I learned, and hopefully this will help. I was offered two main options:
Option 1: Silicone implants. Shorter surgery, shorter recovery. But implants are not lifetime devices. I was told by my surgeon that they last 10 to 20 years before needing replacement, and there was risk of rupture. H also told me that if I chose silicone, their ruptures may be “silent” with no visible symptoms, and after I researched it, I learned that the leak can potentially cause inflammation, and a symptoms like fatigue, joint pain, and brain fog (what some women and doctors refer to as “breast implant illness.”). At the time of my research, there was also a rare but real cancer risk called BIA-ALCL (breast implant-associated anaplastic large cell lymphoma), primarily linked to textured implants. The FDA explicitly states that breast implants are not lifetime devices and that patients should expect at least one additional surgery. If I didn’t have any other choice, I would go for this and would do a lot of surveillance, but I had another option.
Option 2: DIEP flap reconstruction. This is what I chose. It used tissue from my abdomen for reconstruction. If I lose weight, it will “shrink” with me, if I gain weight, it will grow with me. The surgery is longer (mine was eight hours) because they do reconstruction all at once, and there is the added recovery of your core / abdomen, so recovery takes about six weeks.
The surgery went very well, but recovery is not a walk in the park. And it’s where the story gets both harder and more beautiful.
The Village And The Things Hospitals Don’t Tell You
Before my surgery, I called the hospital to ask what I should buy to prepare for recovery. The nurse told me I was fine and didn’t need anything specific. I asked again: Are you sure? Nothing?? I mentioned a recliner, special shirts, and other gear, and she told me to just use several pillows to elevate my back during sleep, and nothing else.
Reader, that nurse was wrong. Alright, so technically she was right: sure, I would have survived not having anything else, but my life would have been infinitely worse if I didn’t.
Thank God for the women who had gone before me. I reached out to friends who’d had similar procedures, and they were extraordinary. They shared resources, told me exactly what to buy, and gave me tips on navigating recovery - information the hospital simply did not provide. Because of them, I knew to rent a recliner that could stand me up to a fully upright position (so I wouldn’t strain my abdomen). I in fact slept on it for 2 weeks, and renting that clunky ugly thing was the best thing I ever did. I knew to buy open-front shirts with built-in pockets for the surgical drains which, by the way, are the single worst part of recovery, but very manageable with the right gear. I can’t understand, for the life of me, why that nurse couldn’t just agree that those were good ideas!
(Side note to every hospital administrator reading this: put pockets for drains in the gowns. It would help your patients AND save a lot of your nurses’ time. You’re welcome.)
And then there was the meal train.
Nine of my friends organized a meal delivery for my family with delicious food every single day for a week, so my husband and mother-in-law wouldn’t have to worry about cooking while taking care of me during those crucial days. A small-town tradition, with me as its lucky recipient.
There is something profoundly healing about being fed by people who care about you. It’s not just the food, it’s the message: You are not alone in this. We’ve got you.
I felt so taken care of by friends, by family, by the dedicated nurses, and by my surgical team. I’ll never be able to thank my breast surgeon enough. Her precision, care and her super human team - the best. She introduced me to my plastic surgeon, who is not only technically brilliant but genuinely empathetic. There’s a special trust involved in letting someone reconstruct part of your body, and I was lucky to find a surgeon who is equal parts artist and human being.
A Love Letter
All in all, despite the trials and tribulation, the stress, anxiety and difficult decisions, I’m writing this not as a cautionary tale, but as a love letter.
To our bodies, these imperfect yet resilient, miraculous machines that carry us through everything and somehow keep going.
To the caregivers, the friends who show up with casseroles, the family members who hold your hand when you’re scared, and the women in your orbit who text to check on you six weeks later when everyone else has moved on.
To the nurses, who do the unglamorous, essential, tender work of keeping us alive and comfortable, and who deserve pockets in those gowns, honestly.
To the surgeons with skilled, steady-hands who fix us, and rebuild us.
And most of all, this is a love letter to the survivors. The ones who carry the anxiety before every scan, the worries about the statistics, the fears about not being there for your children and families, and the strength to keep going no matter what. You are brave, and you are not alone.
Angelina Jolie wrote in her op-ed: “Life comes with many challenges. The ones that should not scare us are the ones we can take on and take control of.” That was the most important thing for me. I can’t worry about things I don’t control, but I can choose to have peace of mind, to know I did my best for me and my family, and to regain a little more joy in my life.
Sending love and health,
Patricia