Seven years before Angelina Jolie wrote openly about her double mastectomy, I had a double mastectomy and chose to keep it a secret. In 2006, the idea of taking the breasts of a 42-year-old woman with stage 0 breast cancer was virtually unheard of. At the time, it was usually treated with less-radical surgery.
My diagnosis was ductal carcinoma in situ (commonly known as DCIS). My original treatment plan called for a lumpectomy followed by radiation, but, as I've learned from many other women who have been treated for breast cancer, things don't always go as planned.
My oncologists were concerned because the two lumpectomies didn't have clean margins. (Although cancer cells were removed, they weren’t surrounded by normal tissue without cancer cells.) I was told my risk for a recurrence was high. DCIS, my oncologist told me, is like spilling salt on a table: You can never be sure you that you picked up every grain. The only way to ensure that all the DCIS is gone is to remove the breast where the cancer was found, she explained.
One thing I knew for sure was that I didn't want to go through this ordeal again. I found the lump in my left breast in February (it felt like a frozen pea, just as the self-exam brochures suggest). But by the time I was deciding whether to have a double mastectomy, it was almost July. In between, there were four months of uncertainty, many sleepless nights, multiple visits to the doctor, one MRI, three lumpectomies, and a vasectomy for my husband because my doctor told me to stop taking birth control. In some ways, the vasectomy was emotionally the hardest for me to deal with; I had always held out hope that maybe we would have another child.
The question had become not whether I'd have a mastectomy, but whether or not I would have a double mastectomy. When my radiologist said, "No one has ever come in here and told me, 'I am so glad I saved this one breast,'" I knew what I had to do.
My husband and I told the following people about my surgery: our parents, my best friend who came in from out of town to take care of us after I left the hospital, two close friends who lived nearby (who I told only because we needed someone to help care for our three-year-old daughter), my boss, my boss's boss, and a human resources manager because I had to apply for disability benefits. Everyone was sworn to secrecy and it still amazes me that no one broke that vow.
It was a lot for my husband and me to deal with on our own — there was no outpouring of support, no one was dropping off meals or arranging playdates for our daughter. But I didn't want people looking at me with pity or telling me stories about their aunt or sister who had died from breast cancer. I didn't want coworkers stopping by my desk every day to ask me how I was feeling. I wanted to keep work a cancer-free zone.
But not telling friends and coworkers came with a high emotional cost: My recovery was very lonely.
Once my best friend went back home, I was alone all day while my husband went to work and my daughter went to day care. I watched every episode of Sex and the City and cried a lot — not because I felt sorry for myself, but because I felt so lucky to have caught my cancer early, to have a medical team that educated me about the benefits of having a mastectomy, and a husband who supported my choice. The pathology report showed that I made the right decision: My left breast was riddled with DCIS and my right breast had "irregular" cells.
People who had known me for years had no idea what I had just been through — and many still don't. I’ve often thought how ironic it is that I received no credit for the bravest thing I've ever done. They don't know that after the surgery I couldn’t pick up my daughter and give her a hug. They don’t know that I turn away from my husband when I get undressed or that I lock the bathroom door when I take a shower because I don’t want my daughter to walk in and ask me about my scars.
For a while, I stopped hugging friends and family members who didn't know about my surgery because the tissue expanders that were implanted in my chest after surgery were as hard as baseballs. Until I received my permanent implants, my breasts would be rock hard. My daughter once knocked her head on one of the expanders when she was hugging me and let out a loud, "Ouch!"
My friends and coworkers also didn't know that during a three-day weekend I had surgery to swap the expanders for permanent breast implants, or that I went back to work with drains under my clothes for about a week. All they saw were my new perky breasts, which looked very natural under clothing. In fact, when I went back to work and started socializing again, several friends and colleagues commented that I looked thinner or younger, or maybe I just looked refreshed after that four-week vacation.
Over the years, I've 'fessed up to few people — mostly because they revealed their own diagnosis to me, or a relative or friend's. In those cases, I never hesitated to tell them my story and offer support. But it's a bit awkward to tell someone about such a life-altering experience years after it's happened. Their reactions have varied: Sometimes they're amazed that I was able to keep it a secret; other times they're really annoyed I didn't tell them. At least once I felt like a friend thought I was lying.
Although I don't let my breast cancer define me (I don’t wear a pink ribbon, participate in any cancer walks, or call myself a survivor), the experience has definitely changed me. It taught me that life is short, but it also taught me that I'm resilient, and stronger than I thought.