Mariel (name has been changed) enjoys a wide circle of friends with whom she shares a love of music and culture. None of them knows that she is living with metastatic breast cancer.

“I’ve lived over half a century and have done a lot, but if I revealed my diagnosis, I would become known as ‘the one who’s dying of cancer,’ ” says the 56-year-old former New York City schoolteacher who, like a number of women interviewed for this story, has asked to remain anonymous. Since her 2006 stage IV diagnosis, Mariel has chosen to confide only in her male partner and her brother. Her closest friends know she has breast cancer, but not that it has spread (metastasized). Disclosing the extent of her illness, she says, “would be like putting a neon sign on my head.”

She is one of a surprisingly large group of women with stage IV (metastatic, or advanced) breast cancer who live two lives. In public, they do their best to mask any aches, nausea and exhaustion from the endless round of drug cocktails. They don’t tell their co-workers about the sleepless nights before each oncologist’s visit, the relief when a new treatment slows the tumors’ spread, the sinking dread when a scan shows evidence of more disease in their bones, lungs, liver. They may tell their friends that they’re in a bad mood, but not that it’s because they’ve been talking to an estate planner. Only at home, or with a trusted few, do they feel safe enough to let it all out.

Recently, some of these women talked to MAMM about the reasons they keep their metastatic status quiet. They told us how they’re trying to live as normally as possible, how anxious they are that others will find out their secret…and how much they wish they didn’t have to put up a front.

NO JUDGMENT, NO PITY

Metastatic disease (often referred to as “mets”) can occur either as an initial diagnosis or as a return of an early-stage cancer. When patients learn their cancer has spread, many wrestle with whether or not to tell, what to say and to whom. They hate the idea of living a double life, but they know that people will treat them differently if they don’t. Friendships might become strained. Bosses might assume they won’t get the job done.

They may also be reluctant to share their news with others who have breast cancer. Inundated by the flood of pink ribbons and upbeat stories of survival, women with advanced disease hear the unspoken message that they somehow “failed” where others succeeded.

Clinical social worker Deborah Rosenberg, LCSW, is a counselor at Breast Cancer Connections in Palo Alto, California, which runs the area’s only support group for metastatic patients. She says the main reason many women with stage IV cancer don’t disclose their status is to avoid awkward silences and insensitive comments.

“It changes the relationship,” says Rosenberg, who has been counseling metastatic women since 1994. “You are no longer Jane Smith; you are now Jane Smith with cancer and you’re going to die.”

These women also know that hearing about advanced breast cancer is a scary reminder of one’s own mortality. Even a good friend may shut herself off from a pal with metastatic disease for fear of “catching” it.

But for a woman who battles pain, anxiety and sickness every day, keeping quiet adds yet more stress to her life as she worries: Lynn’s my best friend—will she be hurt if she finds out from someone else? Am I doing the right thing by not telling Mom? Are people around the office starting to suspect?