Double Mastectomy Surgery
I chose to have a double mastectomy.
Sort of.
Some context: Before my diagnosis I knew plenty of people (too many) with cancer of all kinds. After my diagnosis I realized how little I understood about cancer treatment.
In a single breath a doctor told me not only that I had breast cancer but that due to its size I wasn’t a candidate for a lumpectomy. All my life I had believed: the more major the surgery, the worse the cancer. I can still feel the way the air vanished from my lungs when I heard that I would need a mastectomy instead. Then the news that I would need chemotherapy before surgery. So I had a deadly tumor in my body but I was just going to walk around with it inside of me for months first? Why weren’t they rushing me to an OR somewhere to cut it out immediately?
I had always thought, incorrectly, that people who have double mastectomies have the most aggressive cancers, the worst prognoses, or both.
My cancer was in my right breast. It spread from my breast to at least one lymph node in my right armpit, but there was none to be found in my left breast. If I pursued a single mastectomy of the right breast the likelihood of a recurrence on my left side at some time in the future was 10%. Ten percent is low, but it also isn’t 0%. It took me a long time to decide what kind of surgery I wanted, partially because I clung to the idea that a single mastectomy might somehow convince me, the world, or my body that my diagnosis wasn’t as big of a deal as it really was. I was also afraid of making the wrong choice. I went to my final, pre-surgical appointment with my surgeon still not entirely sure what I wanted to do. In that appointment she shared that while the chemo hadn’t eliminated my tumor (that was never the expectation, given the kind of cancer I had), it had shrunk it enough so that theoretically a lumpectomy was possible. Tears streamed down my face. That news was the first thing in 5 months that had made me feel some real hope. And, ironically, it also solidified my decision to have a double mastectomy. I wanted every bit of tissue, every single cell that might be harboring a microscopic vestige of cancer, out of my body.
Sentinel Node Mapping
My surgery was scheduled for October 18, 2021 at Memorial Sloan Kettering in New York, NY.
That morning I had a sentinel node mapping procedure. My check-in time for the mapping procedure was 12:15 p.m. I arrived at 11:30 a.m. to a full waiting room.
I never look at my phone when I’m in a waiting room. You’d think that I’d welcome the distraction of a good doom scroll but subconsciously my body and nervous system know it’s better to be as present and still as possible. Instead, I try to absorb every detail around me. The soothing timbre of the receptionist’s voice. The way the weight of other patients’ footsteps change based on the news they receive from their doctors. The tinny haptics of that one man always typing out a text message with a single finger.
The office was running late and I didn’t get called back until 1:10 p.m. My nurse, a sprite with electric green, marbled acrylic nails, injected a blue radioactive dye into my right breast. Straight, no chaser.
Around 1:45 p.m. I had a full body scan to measure the radioactivity in my breast and armpit (axilla) and make sure enough was absorbed to serve its purpose during surgery.
The dye would travel from the breast through the lymphatic system and drain into the sentinel nodes. It would turn them bright blue. During my mastectomy my breast surgeon would then be able to easily identify and remove the sentinel nodes (people typically have between 3 -5) and send them immediately to the pathology department to check for the presence of cancer cells. If the sentinel nodes were clear (aka no presence of cancer) my surgeon would stop there. If cancer was found in any sentinel nodes I would need an axillary dissection. She would have to remove all the lymph nodes in my arm.
A quick biology primer: the lymphatic system has 2 main jobs:
Help fight infections
Helps drain fluid from your body
Lymph nodes filter lymphatic fluid and remove things like bacteria, viruses, and cancer cells. Sentinel lymph nodes are those closest to the breast. Because of their proximity and function, they are the first place breast cancer can spread to.
If lymph nodes are removed from the arm it can be harder for the lymphatic system to drain properly, putting you at higher risk of lymphedema.
At 1:56 p.m. I was back in the waiting room nervously asking, as kindly as I could, when the shuttle would arrive to take me to the surgical center. My check-in time for surgery was 2:00 p.m. I was anxious af about being late, briefly contemplated speed walking the 10 blocks to get there, and ultimately released the notion that I had control of anything at all.
Surgery
We arrived at the surgical center by 2:15 p.m. The security guard at the front desk was so kind. He gave us instructions that felt gentle and encouraging as they landed. A staff member came to personally escort us from the first floor lobby to the third floor waiting area. I checked in and tried to absorb the space. Matt and I each received badges with sensors on them. My badge monitored my location and automatically updated a tracking system. My name popped up on a status board as ‘Checked In.’ When we were brought to a private room on the sixth floor my status automatically changed to ‘Pre-Op.’ My badge would keep Matt updated about what was happening and his badge enabled my surgeons to find him no matter where he was in the building to give him more detailed information about my surgery face to face.
My room was quiet. It was bright, and it had a view. There was a surgical gown waiting for me. I couldn’t get into it. Not that I didn’t want to or try, but I literally could not figure out how to put it on. There were no sleeves, only snaps...everywhere. I tried over and over to figure it out and then I started giggling. I snapped and unsnapped and snapped and unsnapped. Matt was convinced he could help but he just made things worse. I giggled louder and louder until I heard the nurse outside my door start to giggle too. It felt so good to be silly, so good to let some light in. The nurse, of course, knew exactly how the gown worked. I stepped into my grippy socks, put on my hair net, and got onto the hospital bed. Sexiest patient imaginable. (Note: please read this in the voice of Owen Wilson in Armageddon saying, “So the scariest environment imaginable...that’s all you gotta say.”)
After that everything moved very quickly. Vitals, IV, questions, and visits from my doctors. I was on a train that was already moving and I was grateful for a pace that kept my mind from lingering on any particular thought or worry for too long.
When I was wheeled into the operating room everyone inside it stopped what they were doing, turned toward me, and waved enthusiastically. They gave a shit about me. I could feel it. I moved onto the operating table and someone came over and stood just above my head. I couldn’t see her but she introduced herself.
“Hi, Kate. I’m Laurel and I’m on the anesthesia team...”
“Wait, did you say your name was Laurel?”
“Yes, I did.”
“That’s my sister’s name. Laurel.”
Everything else melted away. I smiled. Big. She and I talked about how neither one of us had ever met another Laurel in person before, what year they were born in...and then I fell asleep.
When I woke up it was dark. My surgery began at 4:48 p.m. and ended at 9:45 p.m. My eyelids were heavy and I tried unsuccessfully to will myself to stay awake long enough to ask someone about how my surgery went (and remember their answer). Matt was allowed up to my room at 11:10 p.m., in spite of it being well after visiting hours and well before I was really awake and ready for a visitor. My surgeon had spoken to him about the surgery and he relayed everything he knew to me that night, but I didn’t remember any of it. Apparently I just kept asking him, “But did you cry???” He left at 11:45 p.m. and I power napped HARD. I adored my first nurse, Will, in spite of him waking me up every 30 minutes throughout the night. I was up for good at 3:40 a.m. and my surgeon came to see me at 5:00 a.m. That’s how early she does her rounds. She’s a teeny, tiny, supercharged superhero.
She told me that out of the 5 sentinel nodes she’d removed and tested during surgery, 2 were cancerous. We had only known about 1 prior to surgery (it had been seen on multiple scans and biopsied, but hadn’t been palpable after chemo, and I had been hopeful that chemo would have ‘sterilized’ it completely). That meant she had removed every last lymph node in my arm. I was really disappointed about having needed an axillary dissection, but it really, really scared me to know that there was cancer in my body that hadn’t been detected on any ultrasounds, mammograms, CAT scans, or MRIs. But then, in the most sincere, deliberate, and heartful way, she looked at me intently and said:
“Kate. As of right now you are cancer free. The rest is just an insurance policy.”
I took a deep breath and repeated the words to myself. (To this day I somehow know them to be true and yet I don’t fully believe them, either. All of the cancer I knew about at the time of my diagnosis was gone. Out of my body. But. What about the possibility that microscopic cancer cells had broken off from my tumor long before it was detected and were hiding dormant somewhere else? That’s what metastatic breast cancer is, after all. It isn’t new cancer. It’s cancer that comes back, sometimes years or decades after finishing treatment.) This was the moment I knew I had made the right decision to have a double mastectomy. Every single cell of breast tissue was removed. It’s no guarantee that the cancer is gone forever, but it was as close to a guarantee as I could get.
I’ll share details about my recovery and pathology report in another post. (Surgical drains, man. They are little f*ckers.)
