Five Years After Surgery
This is a very moving essay written by a woman whom I have known for years. At the time of her breast cancer diagnosis, in 1994, she had two young sons and our shared fear of not living to raise them. She has been well since then, but later learned that she carries a BRCA mutation (this test was not available in 1994). Five years ago, she made the difficult decision to proceed with bilateral mastectomies and reconstruction. Here are her wonderful, thoughtful musings:
Mastectomies and Reconstruction: A View from Five Years Out
The other night I had a dream that my hair was falling out in big clumps, leaving me with a completely bare pate that was a bright, shiny, white. Strangely, in the dream, I wasn't particularly upset. "I can work with this," I thought.
I rarely have these kinds of dreams anymore. This one occurred after a phone conversation with a woman I'd never met. Nina (not her real name) had been diagnosed with breast cancer, was carrying the BRCA2 breast cancer gene, and was contemplating a double mastectomy to prevent a future incident.
I have had several of these conversations over the five years since my own surgery and reconstruction.
Women want to talk to someone who has been through what they are contemplating. They want to know how I made my decision and how I feel now about my choice and its outcome.
Unlike some of the women I hear from, my mastectomies were prophylactic. When I was first diagnosed with cancer in the spring of 1994, genetic testing wasn't yet an option. My treatments included a lumpectomy, radiation, and chemotherapy.
In 2000 or so, my oncologist strongly suggested that I be tested to see if I was a carrier of the BRCA1 or BRCA2 genes. Given my family history, and the fact that I was diagnosed at age 39, she was already pretty sure that I was. And, as usual, she was right. The test revealed that I carry the BRCA1 gene.
My immediate action was to have my ovaries removed. Because of the chemotherapy, I was already post-menopausal and I had two healthy children. The laparoscopic procedure was done as day surgery and I quickly recovered.
Fast forward to 2006, and my oncologist was, for the first time, pushing me to consider prophylactic mastectomies. She said that like me, many of her patients with the gene were fine for 12 or 15 years. "But anecdotally," she said, "some of them go on to develop a second and even a third breast cancer."
No way was I joining that club. My sons were pretty much out of the house by then and I was looking forward to the promise of a freedom I hadn't experienced since I was in my early 20s. Equally compelling was the idea of living without this so-called sword of Damocles poised over my head. How many more conversations like this did I want to have?
In the end, the more difficult decision was not whether or not to have the mastectomies, but whether or not to undergo reconstruction. When sharing my thoughts with one friend, I characterized the issue as whether or not I wanted to leave the hospital with breasts. "Of course you want to leave the hospital with breasts!" she countered.
She was right. But I didn't want implants because they have a shelf life and therefore could require more surgery down the road. And I definitely didn't want a procedure that would negatively impact my ability to be physically active. Some procedures steal abdominal muscles making it difficult to get out of a chair without help, for example.
Another wise advisor, who also seems to know me well, suggested I consider the Diep Flap procedure, which takes skin, tissue, and blood vessels from one's abdomen and uses them to create breasts. This reconstructive procedure can be performed simultaneously with the mastectomies.
The operation takes about 10 hours and requires five days in the hospital. Patients go home with 3 or 4 drains, which are removed one or two at a time during follow-up visits to the plastic surgeon. Total recovery is about six weeks.
The process also includes two additional procedures: a day surgery to create nipples, and an office visit to tattoo on the color.
It seemed like a lot, but I was willing to put in the time for what I hoped would be a long-term, permanent solution that would significantly reduce my risk of another cancer and allow me to enjoy an active life.
Five years later, I can say that I have accomplished those goals. When I look in the mirror, I see myself as I am now. I don't think a lot about what has been replaced. Sometimes I'll see another woman's breasts while changing at the pool and remember what I once had, but there is no regret.
I haven't forgotten that I have had breast cancer, but a recurrence or second cancer is no longer a real and present worry. I have far fewer doctor's appointments and tests than I once did. In fact, last January my oncologist ended our 17-year relationship, saying there was no longer a reason for her to follow me. I'm going to miss our yearly chats, and I am forever grateful that she saved my life.
Sometimes, though, when things are going really well, I find myself bracing for calamity. "Someday," I think, "the bill on all this luck will come due." In the meantime, I savor the good times and try to view life's little challenges as lessons to be learned rather than as annoyances.
But I often wonder about the women who I talk to on the phone. Once we hang up, I rarely hear from them again.
I hope that my answers to their questions help them understand that whatever they decide, they can handle it, and that for all the changes to their outside, they will always be themselves on the inside.
We are all at risk. But, as these phone calls remind me, we are not alone.