After diagnosis, some keep their cancer a secret
Doctors don't hide cancer from their patients, as they did with Bette Davis in the 1939 film "Dark Victory." But sometimes, patients feel compelled to keep all or a part of their diagnosis to themselves.
Last week, Michael Douglas admitted that he downgraded his potentially disfiguring tongue cancer to the more publicly palatable throat cancer. Other celebrities, like the late Nora Ephron, keep their diagnoses entirely under wraps.
Cancer patients can’t do much about mutating cells – or the myriad pokes, prods and procedures they go through during treatment. But they can control the messaging, experts say, deciding whether their cancer is common knowledge or a well-managed secret.
“I think control is an important issue,” says Julie Schnur, a clinical psychologist at the Icahn School of Medicine at Mount Sinai in New York City. “But there are a ton of reasons why people choose to keep their cancer to themselves.”
Sometimes, for instance, it’s just good business.
“I didn’t want my clients to perceive me as incapacitated and jump ship,” says Melanie Young, a 54-year-old breast cancer survivor who ran a Manhattan public relations firm at the time of her diagnosis. “I needed to earn a steady income to pay the bills which piled up during treatment.”
Young told her immediate family, her friends and her staff, but didn’t share her 2009 diagnosis, double mastectomy, reconstruction or even chemotherapy with a single client or colleague.
“When I finally outed my cancer diagnosis in 2011, the reactions ranged widely,” says Young, who recently published a book about her experience. “Most were supportive, but there were a few [clients] who drifted away.”
In Schnur's experience, people who tell their colleagues what they’re going through are often pleasantly surprised by the show of support. But compartmentalizing cancer can also be a comfort.
“Sometimes, work is a respite, a place you can go and just be yourself and do your job,” she says. “In a way, it’s an escape.”
Catherine, a 49-year-old Seattle breast cancer survivor who asked that her last name not be used, told friends and family about her diagnosis, surgery and treatment but kept it from everyone but her boss and HR representative when it came to work. She didn’t want to be thought of as “the cancer patient.”
“I didn’t want to be judged by my cancer,” she says. “I wanted to be ‘normal’ somewhere in my life.”
“I hear that a lot,” says Schnur. “Women will say, ‘I didn’t want to be cancer girl.’ I didn’t want to be the sick person and have people ask, ‘How are you’ and do that sympathetic head nod.”
Other patients keep mum because they’re worried about how loved ones will react.
“They’re worried it might be a burden to others or they won’t be able to handle it,” says Schnur. “I hear that a lot with women who don’t want to tell their elderly parents.”
It’s a legitimate concern. A 2008 study that interviewed 164 breast cancer survivors found many were thrust into the role of caretaker for emotionally overwhelmed friends and family.
“Some people are good judges of who can or can’t handle what,” says Schnur. “I don’t think secret keeping is always a bad thing. And there are levels of secret keeping. Some people never share their diagnosis. Others share it but never show up without a wig. It’s how you feel comfortable and how you want to be seen.”
But Sue Harden, a Los Angeles-based clinical psychologist and cancer survivor herself, cautions that secret cancer can be a double-edged sword.
“If you’re a private person, you aren’t going to be asked a lot of questions,” she says. “But [patients] may not be able to get the support they need. And they could get negative judgment because people don’t know what’s happening.”
Harden lived this herself after being diagnosed with Hodgkin’s lymphoma at 17. While family and friends knew of her disease, others simply came to their own conclusions about what was going on with her health.
“I was going to high school and it was a small town,” she says. “When I went through treatment, I didn’t lose my hair but I got down to like 90 pounds. People thought I had anorexia.”
Patients who keep their diagnosis to themselves may also find it challenging when they finally do spill their cancer beans -- their friends and family may not understand why they weren't told. It's a good question, especially when so many people are, as Young puts it, “turning their cancer into a reality show or story with videos and blogs.”
Mandi Hudson, a 33-year-old marketing maven from Salt Lake City, uses Twitter, Facebook and other social media tools to keep her loved ones up to speed on her breast cancer. But she admits to mixed feelings about her transparency.
“I still battle with it sometimes,” she says. “People have told me that I’m not making a wise choice by tying my name to cancer, that people won’t want to hire me. And I’ve thought about deleting my blog. But cancer is part of who I am. I’m not going to pretend I don’t have it.”
Hudson admits her “awesome” support system often outweighs her desire for privacy.
“When I became the mayor of the cancer center on FourSquare my friends were really upset,” she says. “And they were really happy when I was usurped. They were like, ‘Yes, finally!’”
Secret cancer, Facebook cancer, compartmentalized cancer – experts say it’s ultimately up to the patient as to how they want to handle their disease.
“There’s no right answer,” says Harden. “Everybody has to make their own decision as to what feels right to them and what doesn’t. But cancer isn’t something to be ashamed of and nobody should feel that. If somebody makes you feel that way, that’s their issue. Gaining support is not a bad thing. And asking for support shows strength, not weakness.”
Diane Mapes is a frequent contributor at nbcnews.com and TODAY.com and writes the breast cancer blog, doublewhammied.com. After her diagnosis and through treatment, she had semi-secret cancer. Now, she’s more of a “Facebook cancer” kind of gal.