The Emotional Cost of My Secret Mastectomy

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.

double mastectomy
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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.

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