It was difficult to explain to the plastic surgeon how I had come to be sitting in his office this morning. The short answer of course, was that I wanted my breast implants evaluated for rupture as it had been three years since they were last checked.
The longer answer dredged up an awful lot in me.
In the fall of 2011, after years of medical issues, my daughter was diagnosed with Cowden Syndrome, a rare PTEN mutation that greatly increases the risk of multiple cancers as well as benign tumors, and vascular malformations. My diagnosis, as the carrier who passed that gene onto her, came a few weeks later. By all accounts it appears my mutation was de novo, and it went undiagnosed for 38 years.
When 2012 began, Meghan was 8 and I was 38. We both had complicated medical lives, and our diagnoses made sense. They connected a lot of ‘dots,’ but precious little was known by most doctors about what to DO once the diagnosis of Cowden Syndrome was made.
In the early months of 2012 I was sent to a breast surgeon to assess my risks in light of this new knowledge of Cowden Syndrome. I had been told a good deal of the cancer risks, including the upwards of 90% risk of developing breast cancer, peak at about age 40. I was closing in on that milestone, and I was reminded of that when I met the surgeon. She was a feisty red head who walked into the room armed with papers I had sent detailing the 8 previous surgical breast biopsies I had had dating back well over a decade.
I had gone to the appointment alone and was taken aback when she asked when she could put me on the calendar.
“For what?”
“A bilateral mastectomy.”
She was so matter of fact. I had lost my ability to speak temporarily.
“Your diagnosis, your family history (my PTEN negative mother had had bilateral breast cancer at the age of 48) make your future with breast cancer almost certain. I recommend you take care of this now.”
I remember trying to get her to agree on a summer date when she told me March 5th. I explained I was a teacher and I’d have time in the summer. She was undeterred. She sent me to her scheduler who set me up with a plastic surgeon where I needed to have a consult before March 5th.
I sort of remember the plastic surgeon. She was a tiny woman, kind in her soul. She explained all the reconstructive options in detail. I balked at each one wondering what no one was understanding. I was parenting a sick child. The sheer number of appointments and surgeries she needed left me marveling at how I still had a job. Coming into Manhattan for “fills,” and setting up ANOTHER surgery would not/ could not work. At the time my husband had a job with no sick days. If he was not at work, he was not paid. We carried two medical insurances to save on the co-pays that often felt insurmountable. There was simply no way to make this any more complicated than it was. I convinced her to reconstruct with implants that same day, despite her caution that I would not be happy with the results.
When the pathology showed cancer, a small spot of DCIS in the LEFT breast, a month after an MRI detected nothing, I decided I needed to just be grateful that the entire spot of cancer was removed and no treatment was necessary. Bullet dodged.
And just in time. My complete hysterectomy was scheduled for May16th of the same year!
Four years later, losing my MIND with agitation at the right implant, and sick of literally wearing a bra 24/7/365 to protect my overwhelmed sensory system, I sought out the counsel of a plastic surgeon. I looked for the surgeon who had been so kind to me in 2012. She was not “in network” with my insurance. Obsessed with keeping costs in check, I met with the only “in network” plastic surgeon from the same hospital. He was fine, and suggested changing the implants to see if it helped. I was desperate, asked few questions, and agreed in hopes it would calm things.
In August of 2016 he swapped them for a new set. It didn’t help. In hindsight the insult to my senses was most likely caused by tissue differences after a decade of surgical biopsies of the right breast. I kept the bra on and didn’t look back.
My “foobs,” a term we sometimes use to refer to “fake boobs” were the least of my concerns. My daughter, whose story is largely the one detailed through this blog since 2012, was constantly going through it with this damn disease.
I’d like to say her life calmed, and her medical issues settled, but they didn’t. What happened though, is somewhere along the way, decades of me tirelessly advocating for her made her a force to be reckoned with in matters of her own health. During her senior year of college, she made the difficult decision to remove her doomed breasts after they had begun to show changes and tumors. We used a few long weekends to interview breast surgeons, and she was led to a plastic surgeon. This surgeon, I was informed, accepts my health insurance coverage as out of network, and payment in full when it is related to genetics and cancer diagnoses.
When I saw the door to the office in the fall of 2024, I was transported back to 2012. I was in the same office I had been in, terrified and determined to keep my family afloat. I lost my breath for a minute, and recovered as quickly as I could. That appointment was not about me. And, the doctor was remarkable to Meghan. He was it seemed, almost inspired by her drive to get her own mastectomy done on her time table, and to not let any of it interfere with her acceptance to a Physician Assistant program.
Suddenly though, everything made sense. His associate was my surgeon from 2012. She was not “in network” and the chaos in my mind and soul during that window of time kept me from remembering the “payment in full” that they accepted from my health carrier. If I had remembered ANY of that, if I had not lost large portions of that window of my life to the sheer trauma of it all, most assuredly I would have been back with her in 2016.
Instead, I was left to give the shorter version to her partner this morning.
Brevity does not do this story justice.
The truth is, every piece of this Cowden Syndrome journey takes a bit of your soul. I raced through life from one crisis to the next for so long, that it took years for me to realize how atrocious my own reconstruction looked. I have spent almost 15 years looking straight ahead and avoiding mirrors.
When you are face to face with a plastic surgeon, it’s hard to know what you want them to say. This surgeon is not anxious to be the third surgeon on incisions that were not his own, and I can’t blame him.
So for now, we did an ultrasound and I have someone to verify the integrity of the implants. For today these “foobs” are strong.
The hard truth is that my aging body is allowed to exist because of choices I made. I meditate on that when I am really at a loss. Growing old is indeed a privilege denied to many.
I remain,
#beatingcowdens
beatingcowdens 