I saw my first non-biopsy breast cancer surgical pitch in 2021 when my new breast radiologist identified an area of concern in my scans that needed to be biopsied. For the first time, I explored prophylactic mastectomies and reconstruction. Since I am a breast imaging frequent flier, every 4-5 years, the radiologist might see something suspicious on the mammogram, ultrasound, and/or MRI . The standard of care for a suspicious finding in a breast scan is a biopsy. My 2021 MRI-guided biopsy was my third or fourth in the last twenty years. I’d get the results 5 days later during a scheduled consultation appointment - something the breast imaging center does for everyone to help mitigate anxiety about the appointment. Every time I needed a biopsy, I found I had to work very hard to keep my mind focused on what I knew and not the what-ifs that flooded my thoughts.
In the fall of 2021, I felt more dread than usual. I always assumed that I would get breast cancer someday because of my family history and genetics. My hope was that my breast cancer would be caught early, addressed surgically, and not a life-threatening issue. In fact, when I was dating my husband, I told him that I was a likely breast cancer patient and that my intention, if I were ever diagnosed, was a bilateral mastectomy with reconstruction. He responded that he didn't want to think about it but would support whatever I chose.
In Fall 2021, at age 51, I thought perhaps my number had come up. I had done almost everything I could do to minimize the possibility. I had my ovaries and fallopian tubes removed at age 38, which brought my lifetime probability of breast cancer down from 80% to 40%. Huge impact. I avoided estrogen (HRT without estrogen). I exercised. I ate clean and healthy - managing inflammation. I naturally process stress well. But still, I felt more worried than prior biopsies.
My sister suggested that I explore what my mastectomy and reconstruction options could be as a way to reassure myself that even if it was cancer, I would know what to expect. I made an appointment with a Bunke clinic surgeon specializing in the DIEP flap reconstruction procedure. In fact, he is published in the Atlas of Microsurgery Techniques and Principles, educating people on the DIEP flap. An expert!
I entered Dr. Buntic's exam room while Tracey parked the car. He beat her to the room. As he looked at me and my records, he mentioned that he saw I recently had a biopsy, and he had the results. I looked at Dr. Buntic with a combination of shock, anxiety, and curiosity. He glanced at me and said, "It's good news." So that's how I found out that in fall 2021, I did not have breast cancer AND that I would be a good candidate for a prophylactic mastectomy and DIEP flap. In fact, Dr. Buntic thought I would be delighted with the results. Dr. Buntic also wanted me to meet with a breast surgeon and recommended Dr. Susan Lee Char. He recommended seriously considering the prophylactic option because I would be healthier and recover faster if I hadn't already endured chemotherapy.
This was a slow-moving curveball that I ordered up from the batting machine (because I didn't have cancer); I had an appointment with Dr. Lee Char in winter 2022. She explained some of the risks associated with the procedure and ways to mitigate them. The most significant risk was that my skin wouldn't get enough blood supply after the DIEP flap and would become necrotic in places. There was about a 25% probability of that for women like me whose natural breast size was cup size D or more. Her recommendation was that we make a reduction to cup C/D, heal for three months, and then do the mastectomy and DIEP flap. My risk of necrosis would fall to under 5%, and my appearance wouldn't be significantly different. She also recommended the prophylactic approach.
By May 2022, I had all the requisite information but no urgency. My doctors, sister, and mother all shared that I would likely recover quickly and that I would lose sensation from the nipple down (bottom half of the breast). That's the price of a breast cancer-free future. I was also frustrated by the challenges of my middle-aged body shedding some of my belly pooch, so the combination of a tummy tuck and breast lift seemed like another positive - the Mommy Makeover. Mine would be covered by insurance and eliminate the vast majority of my breast cancer risk.
On the one hand, I have been resisting prophylactic surgery since my sister's initial diagnosis in 2003. I felt that major prophylactic surgery for a disease I didn't have and that would be detected early was excessive. Breast cancer didn't keep me awake at night. I was secure that my lifestyle, close medical monitoring, and salpingo-oophorectomy would either eliminate my breast cancer risk or find it so early that it could be dealt with minimally. Anxiety drove many decisions for people I love and narrowed their lives, so in many ways, I was both rejecting a life guided by fear and rebelling against pressure to relieve my Dad's anxiety by having major surgery. There are risks with surgery. My sister had significant complications and infections following her bilateral mastectomy. My mother was not happy with her reconstruction for over 20 years until she had an additional mastectomy and the DIEP flap procedure. This was not a minor, no-brainer surgery like the salpingo-oophorectomy. Bi-lateral mastectomies were significant surgery with a lot of uncertainty of outcome and possibility of infection and pain.
My doctors, sister, and sister-in-law offered an alternative perspective I began considering. The older I was, the more difficult the recovery from a bilateral mastectomy and reconstruction would be. They added that if I waited until I had cancer, I likely would be weakened by the chemotherapy, which would further challenge a swift recovery. Finally, my sister added that if I could prevent embroiling my husband and children in the unpleasantries of chemotherapy, wouldn't that be a gift to give them? My sister-in-law (the physician and 2-time cancer survivor) was blunter; in her opinion, this was a no-brainer, and I should do it because I'm healthy and strong. Both my sister-in-law and my sister emphasized the profound benefit of having control over when to have my surgery so that I could minimize the disruption to my life. Given that we like to ski in December, travel in the summer, and cheer our baseball player and lacrosse player on the fields…there really was a needle to thread to time this surgery and not compromise on anything else I wanted to do.
Over the last ten years, the argument to protect my family from the chemotherapy experience became compelling, and my desire to be happier with my midsection increased. Statistically, the probability of breast cancer increases with age, although my family developed it young. More people I knew had been diagnosed with cancer, and while most of them became cancer-free through treatment, a few of them did not, and cancer killed them young. When my friend Dana passed at 51, I was struck by how unfair it was. There is so much to live for, including the adventure of my children's lives and the fun of exploring the world with my husband. I wondered if I was being arrogant or playing a game of Russian roulette with BRCA1. Dana's death and the death from breast cancer of two of my sister's friends rattled my confidence that breast cancer is always vanquishable.
I was sad that I would eliminate sensation in my breasts to have the benefits, but that didn't seem like a solid reason to force my family to care for me through chemotherapy. I'm tough, and I was confident that I could endure anything for a period. I knew, from my family's experiences as well as my community, that cancer treatment isn't endless. Additionally, my sister doesn't remember the worst of her chemotherapy experiences. She has chemo amnesia, thankfully. My brother-in-law and I remember it vividly. My mother didn't know what was happening downstairs, and my father doesn't remember, but it is seared into my memory. From my perspective, treatment would be harder on the people who love me than it would be for me because if it was awful, I wasn't likely to remember much of it.
Additionally, there is a lot of medication to make me feel better during chemotherapy, but not much for my family and friends. My bestie validated why controlling the schedule and the process was advantageous and only possible with the prophylactic choice. She also made me laugh with her list of what she planned to bounce off my future rock-hard abs (pennies, light balls, nothing heavy) - and I appreciated lightening the prospect of this major surgery with something funny to imagine.
After reflecting and sitting with the choice for a while, I reached out to Dr. Buntic and Dr. Lee Char to schedule the breast reduction for October 2022 and the bilateral mastectomy and DIEP flap reconstruction three months later in January. The bilateral mastectomy and DIEP flap (DMX with DIEP) is a 10-14 hour surgery with a breast surgeon, two plastic surgeons, and their fellows, so it's a bit of a scheduling nightmare. I wanted it in early January to travel to Florida by March for Spring Break baseball. Dr. Buntic was adamant that I should not lose any weight before January 10, 2023, because he needed everything I had to create my new breasts. That was a happy “problem.”
The breast reduction was a shorter surgery, and its purpose was to lift the breasts and eliminate enough mass and skin to minimize the necrosis risk from the DMX with DIEP. During the weeks before the reduction, I asked friends who had mastectomies or reductions about the loss of sensation and its impact on their intimate relationships. Every one of them confirmed that the reduction cuts the nerves, and I would lose sensation in my nipples and lower breasts. They also confirmed that their bodies found ways to compensate. I didn't ask for details. I was sad to lose sensations I had enjoyed for many years, even though I didn't feel it would make me less feminine or less sexy. I worried about what it would mean to our middle-aged sex life. Ultimately, having already made the decision to proceed, I repeated the serenity prayer to myself and added a prayer that doing this surgery would protect me, my family, and my friends from the difficulties and fears of a breast cancer diagnosis.
During pre-op, my surgeon told my husband and me that I had a great anesthesiologist but he’s “a bit gruff.” The surgeon didn’t want us to worry. Neal and I met the anesthesiologist, and he is a Russian immigrant - not gruff...just Russian. He walked me through the process of going to sleep and waking up. Then...I walked into the surgery suite and laid eyes on the massive computer system for the anesthesia AND the overhead lights. I would certainly be in the spotlight. Because I'm short, the nurses brought me a step stool to climb up onto the operating table, and then the anesthesiologist did his thing.
The surgery went smoothly, and the pathology on the removed tissue was benign, as expected. The next thing I remember is waking up in a bed with Neal nearby, my right hand happens to be resting comfortably over my head. Dr. Buntic pulls the curtain to walk over to me and asks what I am doing with my arm. Half-conscious, I said I was relaxing. He was glad that I could move my arm over my head without pain (which I later learned is unusual) and equally adamant that I stop doing it so that I don't pull out the sutures!
I didn't feel a lot of pain and was able to manage with acetaminophen and ibuprofen. I was nervous to see what my smaller, "lifted" breasts looked like. The first view is the hardest because the sutures are red and angry; my body looked different. I wasn’t shocked and I looked how I expected I would look which was reassuring. I was sad that I didn’t look like me anymore. Unlike the photo shoot for my hair, I did not take topless photos of my body. My reflection in the mirror had changed. The only memories of my naked breasts were in my mind. This wasn’t something I did because I was bothered by how my breasts looked or felt. I did this to prevent a disease that I might get. I looked at my body with sadness and resignation combined with recognition that I was doing the right thing for my future.
My breasts looked a little perkier and a little smaller. There was no sensation from the nipples down, and I don't think it will ever return. It was not surprising, but the finality and certainty extinguished my last flicker of hope of retaining some feeling. The “girls'' were a physical asset that I liked. I liked how I looked in dresses and lingerie. I remember laughing when I put on a push up bra at Victoria’s Secret in my twenties because I looked ridiculously buxom. When I nursed my children, I marveled at the many shapes and sizes of my breasts and then was happy that I was lucky and they sustained my children. (note to joelle, maybe link to the requiem for the girls). Sadly, the girls were going to be temporarily transformed and then unceremoniously removed and replaced to sustain my life - in spite of their outstanding service to me, my husband, and my children, they now had too high a possibility of killing me.
A frustrating surprise was that my abdomen appears bigger and poochier with my slightly smaller breasts. Of course, the mastectomy and DIEP flap "tummy tuck" should help that in a few months so I could live with a temporary pooch. Dr. Buntic reminded me not to lose weight.
I couldn't lift weights for 6 weeks, but after two weeks, I could exercise gently (walking and biking with limited intensity). My scars faded quickly, and Dr. Buntic said I was in the top 1% of healers he'd seen in his extensive career. That's likely a combination of genetics (thanks, Mom and Dad) plus my longstanding investments in exercise and healthy(ish) eating AND my mindset. I could listen to and respect my body's needs while I healed, ask for and accept help from my community, and stay focused on my near and long-term goals. Those goals were to enjoy the upcoming family holiday (relative term) and become liberated from the prospect of breast cancer (long term).
With my newly reduced breasts healed, my family embarked on an epic Ice and Fire holiday trip. Our immediate family went on our annual ski trip and then met my extended family for fun in the sun for a special trip to celebrate my parents' 55th wedding anniversary. Everyone was healthy, optimistic, and confident that my January 10 surgery would be a success and that we could finally put the specter of breast cancer into a far corner of our minds.
Continue the story…
