How to talk to about a cancer diagnosis : Shots

Miguel Angel Partido Garcia/Getty Images

Miguel Angel Partido Garcia/Getty Images

When my wife was diagnosed with breast cancer, she told … well, not everyone but pretty close to it.

Marsha told me, calling from the car after a routine mammogram prompted the radiologist to (rather callously) say, “Sure looks like cancer to me.” (I added to Marsha’s dismay by insipidly saying, “Ew, that doesn’t sound good.”)

She told her mom (her dad was deceased) and her two sisters … and the family grapevine did the rest.

The news that the Princess of Wales has cancer brought back memories of those hectic first days after diagnosis.

The palace kept the information hush hush for … weeks? Months? Then Kate revealed it in a poignant video.

Clearly the royal family has its own set of concerns about going public with a cancer diagnosis. But the instinct to keep it close to the vest is understandable. Nobody likes to share bad news in our culture. People don’t always know how to react and conversations can get uncomfortable.

And you sure don’t want to be known as that “person with cancer.”

Perhaps that’s why some people are reluctant to tell, says Dr. Monique James, a psychiatrist who counsels patients at Memorial Sloan Kettering Cancer Center: “They think this medical diagnosis is now going to be the only thing people see.”

So anyone who’s been told they have cancer must wrestle with difficult decisions about sharing the news. Do you tell little kids in the family? Elderly relatives? Colleagues at work? All your friends and neighbors?

In the end, many people do decide to speak out. What Marsha did is pretty typical, says James. “I find that most people will share with close loved ones very early on, probably in the first week or two.”

That’s because, she notes, cancer “can be a very lonely disease.” Having at least a few confidantes can ease the sense of isolation.

Still, while some may find it cathartic to share, it can also be exhausting and feel like an added pressure on top of an already bewildering time.

Here’s what I came to understand about the pros, cons and best ways of sharing of a cancer diagnosis from my wife’s experience and from interviewing dozens of people who’ve coped with cancer for two books I went on to write: Breast Cancer Husband and, in collaboration with my older daughter, My Parent Has Cancer And It Really Sucks.

Decide how much you want to say – and to whom

Take a moment and figure out how much you do want to tell others. Maybe, says James, you’ll come up with a 2-minute script for casual acquaintances and a 20-minute version for those you hold closer.

But remember, if you decide to keep the news from some people in your circle and not from others – or if you have different versions of what you’re telling – you could add to your own stress level as you try to remember who knows what, says Hester Hill Schnipper, an oncology social worker in private practice and author of the blog Living with breast cancer.

For a cancer patient who’s disinclined to hash it all out with lots of people, designating a close family member to be the informant could be a boon, she says.

It also might be helpful to have a strategy for responding to unhelpful remarks. Like the relative who told my wife that she got breast cancer because she used deodorant. Or people who respond to the news of a diagnosis by saying, “I know someone who had that cancer and died.”

Schnipper proposes responding: “Why did you say that?” That comment “takes it off you and puts it on the other person,” she says.

You can always decline to answer prying or unhelpful questions. Try saying, “I just need a break,” Schnipper suggests.

Honesty is usually the best policy when it comes to your kids and other family

Marsha decided to keep the diagnosis from our kids, then ages 12 and 15, for a couple of days. Her fateful mammogram was the Friday before Labor Day. School was starting the coming Tuesday, and she and I both thought it would not be good for them to be stressed out about mom’s cancer on top of new school year jitters.

It was darn near impossible to hold in the news. When the kids were typically annoying teens, Marsha would rather mysteriously said, “You don’t know how I’m feeling.”

And of course they didn’t. Which made for a weird couple of days.

She told them when we picked them up from school that first day. Turns out that was a good strategy. The car is a great place to tell your kids, therapists say. There’s no need for eye contact, which can be daunting. And of course the kids can’t exit the conversation and run off to their room.

Some parents want to shield really young kids from the news, which could be possible if the cancer treatments won’t lead to noticeable changes – hair loss or fatigue or prolonged hospitalizations, for example.

But when there’s cancer in the house, keeping it a secret even from small kids could backfire. Maybe they’ll overhear a relative or neighbor say the word “cancer.”

Even little kids “are keen observers,” says James. “They might not know exactly what’s going on but they see things. To include them in what’s happening to the family unit is the best thing to do.”

“People want to protect people they love by not sharing crucial information,” says Leonard Ellentuck, a social worker at the Lombardi Comprehensive Cancer Center at Medstar Georgetown University Hospital. “Generally speaking it’s better to be honest even with children or they will feel deceived.”

The same goes for older kids. I’ve interviewed individuals who decided not to tell a grown child away at college or living in another part of the country.

Therapists urge that you think of the ramifications: Are you setting a pattern where your grown kids won’t feel they need to share their own life crises with you? And they could feel betrayed when they eventually do find out – because secrets are very hard to keep.

As for older, frail family members, they’ve likely lived through a lot of life crises. Yet if a frail elderly parent or another relative, at the end of their years, lives far from where you are and may be facing their own mortality, Schnipper understands a cancer patient might decide it would be best to shield them.

Family revelations are complicated if talking about cancer is a taboo in your culture. That may mean parents or siblings may not be comfortable offering a listening ear. The solution is to search for other avenues – perhaps a support group, says James.

Talking to colleagues and professional contacts

If you have a job, you may fear that sharing the news of a diagnosis with workplace associates will bring on stigma. People indeed may think, oh you can’t do the work you are expected to do, says Ellentuck.

Yet sharing with a supervisor will likely be essential because you may need to miss days for consultations, perhaps for surgery or other treatments.

“I would suggest speaking to somebody in charge to find out what the rules are about benefits,” Schnipper adds. “Do you have the option of short-term disability? Can I use it intermittently or all at once.”

“But you don’t have to go into detail with everyone,” James notes. And if workmates – or really anyone – presses for details, you can always say, “I’m not comfortable saying more.”

My wife, who teaches high school, decided to tell her students. She wanted them to know that cancer happens, that people get through it, that she would be missing some days due to her chemo treatments but that she was going to keep on teaching. Although since they were teenagers, she decided not to mention that the cancer was in her … breast.

Privacy is of course an option – but sometimes you’ll go public in ways that surprise even you

The therapists I interviewed all counsel “truth telling” but they also recognize that it is up to the patient.

James says she works with a psychologist who often says “the patient with cancer is in the driver’s seat” and the rest of the family are in the passenger seats.

So yes, some cancer patients will opt for relative silence. But the unfolding saga of Princess Kate shows that people can provide great support once the news is shared.

That’s how Marsha (and I) felt. For every unfortunate remark, there were just tremendous waves of love that we basked in. I still remember how our neighbor brought over the most incredible tuna noodle casserole for dinner one night..

And even though cancer is no laughing matter, there may be times when you can go public with a sense of humor.

One woman told me that when she was wearing her wig during chemo, she went out to dinner with friends. A diner at the next table was loudly complaining, “I’m having a bad hair day!” The bewigged cancer patient grabbed her wig, pulled it off her head and declared, “You think you’re having a bad hair day…”