Hidden battles: Keeping cancer secret

Zoe was new to her city and job as an attorney at a competitive law firm when she learned she had breast cancer. As she embarked on a grueling regimen that included surgery, chemotherapy, and radiation, the young woman made a striking choice: she told only her boss about her health crisis, strategically scheduling treatments to avoid taking too many days off and obtaining a wig that looked exactly like her natural hair.

Zoe kept her diagnosis under wraps not just to avoid pity or probing questions, but also the perception that she might be too ill to handle her professional responsibilities.

"She didn't want cancer to interfere with getting promotions, and it didn't," recalls Cristina Pozo-Kaderman, a senior psychologist at Harvard-affiliated Dana-Farber Cancer Institute. "She continued to excel and earned her promotions on track."

Even in a tell-all age where some people blare health updates to anyone who will listen or scroll through social media, an uncountable slice of the two million Americans diagnosed with cancer every year do the exact opposite. Instead, they take the news underground, revealing their diagnosis, treatment, and aftermath to no one or only a select few.

While valid reasons exist for both transparency and secrecy, each poses distinct pros and cons, Pozo-Kaderman says. And someone's approach may waver as they move through the ordeal.

"Early on, you yourself are trying to process this information," she explains. "It's not a one-shot deal —it's a process, a cancer trajectory."

Privacy motives

Many celebrities have kept their cancer diagnoses private, at least initially. Famous cases of undisclosed cancers include Princess Catherine of Wales (Kate Middleton), music icon David Bowie, actors Alan Rickman and Kathy Bates, and writer Nora Ephron. Like these luminaries, regular folks may also want to avoid the extra attention that comes with a cancer diagnosis.

Pozo-Kaderman says cancer patients may also wish to

• avoid sympathy or being treated differently
• bypass burdening or alarming others
• protect their job
• feel in control of an uncertain situation
• avoid fielding intrusive questions
• sidestep judgment if their cancer is linked to lifestyle choices.

While it's difficult to pinpoint who's more likely to conceal cancer, Pozo-Kaderman has noticed cultural, religious, and age differences. "For older people who grew up when the word 'cancer' wasn't used — when it was called 'the Big C' — you see more hesitancy," she says.

Generally, though, most cancer patients who opt for secrecy do so to shield themselves or others. It's okay to prioritize your own well-being, however.

"Focus on using your energy to take care of yourself during this process," Pozo-Kaderman says. "Set boundaries so others can help, but not become overly intrusive or involved to a point where it becomes detrimental to your well-being."

Streamlining communication

Even before you hear the words, "You have cancer," it's wise to identify who you'd be willing to confide in during such a scenario. "When you're going through the diagnostic process, your anxiety is going to be off the charts," Pozo-Kaderman says. "Having a trusted person offers you not only support, but someone else who can absorb information. They can help you remember what's said and ask questions you may not have thought of because you're so overwhelmed."

When people with cancer do choose to tell others, streamlining the process can make it less daunting. First, answer three questions: Who should know? How much should I reveal? When should I disclose this? You're in the driver's seat. "How do you want to unfold the narrative?" Pozo-Kaderman asks.

Sharing the news about your malignancy isn't necessarily an all-or-nothing proposition, either. Some people choose to inform only a tight circle, while others spread the news far and wide—not just to people they see often, but online.

"It's sort of on a spectrum," Pozo-Kaderman explains. "We have some patients who blog about it and write weekly updates, posting step by step, as well as people who share their overall diagnosis and nothing more. Others might simply say they're getting treated for something, but don't say it's cancer."

One way to simplify communication is to compose periodic group texts or emails to keep others in the loop, making sure to point out your preferences on contact — for instance, that you appreciate calls and texts but may not be able to respond.

Alternatively, it can be extremely helpful to establish a "point person" to handle this task, especially in the first overwhelming days after diagnosis. Whether a spouse, relative, or good friend, this trusted individual takes the role of communications lead, sharing updates and fielding questions from people who want to know how you're feeling or how many treatments you have left.

"They can run interference with others and allow you to focus on your recovery," Pozo-Kaderman says.

Secrecy disadvantages

Despite someone's desire for privacy, cancer often shows itself in ways that are hard to hide — whether that's hair loss, excessive weight loss or gain, or extreme fatigue. If people don't know the truth, they may make incorrect assumptions about what's happening.

"It depends on how you choose to deal with the physical changes — and an obvious disruption to your life and schedule if you're not able to participate in various activities," Pozo-Kaderman says. "When that happens, you're taking a pause from life and that makes it difficult to keep your cancer secret. You're not sharing, but people are wondering what's going on anyway."

Some people, especially family members, may also view your lack of transparency as a violation of trust. Withholding such pivotal information from children or aging parents, for example, can also be confusing when they notice cancer-related changes in your appearance or routine and don't know the cause. "You may think you're protecting them, but in a sense you're breaking their trust," she says.

Keeping your diagnosis quiet also poses other disadvantages, such as aggravating stress, anxiety, and depression symptoms and heightening a sense of social isolation. "By not sharing your situation, you're missing out on all the social interaction we know is good for us," Pozo-Kaderman says. "I do get concerned if someone is too isolated and alone, because cancer is a very difficult experience to get through. Most people would want at least their closest people to know — and they want to be there for you, too."

Forms of support

"Being there" might look different for each person who wants to support you as you fight cancer. Confiding in others means having these people to tap for practical and emotional needs that are likely to crop up. These can encompass

• keeping track of appointments and medication
• asking clinicians salient questions about your care and logging new information
• driving or accompanying you to treatments
• running errands
• providing meals when you're not up to cooking
• sorting through medical bills.

"During cancer treatment, you often need that kind of help," Pozo-Kaderman says. "Others can offer emotional support, like listening to you vent or holding your hand on a bad day."

Ways to disengage

Even if you've shared your diagnosis with others, there may be moments you just don't feel like talking about it. It's helpful to have what Pozo-Kaderman calls "pocket phrases" ready to shut down any unwanted inquiries. You can say:

• I'm having a cancer-free day.
• I'll share more information another time, but not today.
• Thanks for asking. I'm doing okay — but how are you?

"Turn it over to them," she advises. "Say, 'I'd rather know about you—I talk about cancer enough.'"

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