Personal Stories

Joan's Story

I found my tumor by self-examination in 1988, at the age of 44. I noticed that a lump I'd had for a long time had become larger and felt like a stone. Neither my internist nor my gynecologist had found anything remarkable in their examination of my breasts only six weeks earlier. I scheduled a mammogram (my fourth), after which the radiologist told me I needed a biopsy and sent me to a highly respected surgeon who had been a pioneer in lumpectomy surgery.

The day after the biopsy, the surgeon told me that my particular combination of a 2cm tumor, cancer cells at the margins of the biopsy specimen, dense breasts, and many microcalcifications made me ineligible for a lumpectomy. My disease was an exceptionally aggressive invasive ductal carcinoma. I was scheduled for chemotherapy even before we learned that the cancer had spread to one of my lymph nodes (I was later randomly assigned to receive Adriamycin and Cytoxan). At that time in my life, I would have done almost anything to keep my breast. I had been divorced for seven years and had no children and no current partner. I took my mammography and biopsy reports to a second surgeon at a second hospital and a medical oncologist at a third. They confirmed that mastectomy was my only shot.

But let's go back to the surgeon's office in the minutes after he told me I would need a mastectomy. He recommended a plastic surgeon who could do reconstruction using a part of my back muscle (the latissimus dorsi), together with an implant. The general surgeon said, "We've done this procedure together before. Our results look so natural that one of our patients went topless on a beach in southern France." I was skeptical.

One reason for my skepticism was that I had seen photos of reconstructed breasts — they looked like grapefruit halves glued to the woman's chest. Even so, I visited the plastic surgeon. His photos looked more natural. He assured me that this was because the surgical procedure he used was superior to older methods and because his surgical skills were better.

The day after my reconstruction, the general surgeon walked into my hospital room and said, with a chuckle, "I know. You hurt in places you didn't even know you had. I didn't warn you beforehand because I was afraid you wouldn't go through with the reconstruction." In fact, I would have accepted twice the pain to have a reasonable facsimile of a natural breast. Before I left the hospital, I steeled myself to look at my chest. I saw that my reconstruction looked like a grapefruit half. I later realized that the plastic surgeon had made clever use of lighting and camera angle to disguise the unnaturalness of his results.

Whenever a woman who was considering breast reconstruction asked about my experience, I told her that my reconstruction looked okay in clothes, as long as I didn't wear clingy sweaters or low-cut dresses. I said I enjoyed the convenience of having my prosthesis permanently attached to my body, but that its shape was far less natural than a silicone prosthesis. And I acknowledged that my reconstructed breast wouldn't seem real to anybody who saw me nude, even in a darkened room.

Privately, I became more and more unhappy with my reconstruction. My implant felt slightly itchy under my skin. It was encased in scar tissue, which made it feel rock hard to the touch and made lying on my stomach very uncomfortable. I talked with my closest friends about the possibility of having a "deconstruction." I thought of it as something I might do if I were still cancer-free after ten years.

For many years, I thought I might be the only woman who regretted her reconstruction, but I never had the guts to say outright, "I wish I had known enough to refuse reconstruction." I believe it was a mistake to have a muscle (plus its major blood vessels and overlying skin) cut away from its normal position on my back and tunneled around under my skin to the front of my chest. The resulting imbalance has stressed my spine and permanently constricted my ribs. I have less strength and stamina to do the things I love. No breast, however natural-looking, is worth that.

About ten years after my treatment, a new study showed that Tamoxifen was helpful in preventing breast cancer. My oncologist suggested that I take it for five years to protect my remaining breast. I told her that I would rather have a prophylactic mastectomy and be done with the tensions surrounding annual mammograms, not to mention the two biopsies I'd had since my diagnosis. At the same time, I could take the opportunity to "deconstruct." I thought about it for a year, then went ahead with surgery. I now have several more scars and my chest isn't symmetrical, but I am much happier with my appearance now than I was with my reconstruction. The first time I went out after the "deconstruction," I felt great in my clothes, even though I was wearing baggies of birdseed in my bra. Later, I gave up breast forms because bras were too uncomfortable.

In the summer of 2007, a few weeks after the nineteenth anniversary of my mastectomy, I toured China with a dozen friendly, intelligent Americans who were strangers to me until we met at our Beijing hotel. I never wore breast forms under the light cotton shirts I brought with me. After ten days, I revealed to three of my fellow travelers, each individually, that I had been treated for breast cancer. Each of the women I told, including one who'd had a lumpectomy the year before and another whose sister had died of breast cancer two years earlier, responded in the same way — "You had breast cancer? I can't believe it!"