'Coming out' with cancer: Patients, experts discuss ins and outs of sharing a diagnosis

From going public on Facebook to friends who ‘ghost,’ patients and experts discuss the ins and outs of sharing a diagnosis

A cancer diagnosis can bring out different traits in people. Mine brought out my inner control freak.

When the radiologist called me with my biopsy results in February of 2011 and I learned I had breast cancer, I immediately told my family, a few close friends and my favorite editor since I knew my freelance work would be affected. After that, I parceled out the news as if I were feeding a baby bird: a crumb here, a droplet there. For weeks, I kept an elaborate list of who knew, what day and time they were told, who broke the news (me, a sister, a friend), and how, exactly, it was delivered. I lived by that list, swearing people to secrecy and chastising those who spilled the beans. I held onto my cancer news so tightly, so obsessively, you’d have thought it was Tolkien’s One Ring.

Part of it had to do with control, I suppose. I had no control over the cancer but by god, I was going to control who knew about it. But it was also just really hard to share the news with loved ones. It was scary. It was upsetting. It was a hurtful, horrible thing to unleash on people, like throwing a tarantula onto their laps, again and again.

It was also draining. I soon learned that, emotionally, I could only handle one or two “reveals” a day. More than that and I’d start to feel exhausted — and very, very blue. Sometimes, people would cry and need to be comforted. Sometimes, they would ask tough questions about my odds that I had no idea how to answer. Sometimes, they would disappear.

Diane Mapes
Author Diane Mapes Photo by Robert Hood / Fred Hutch News Service

Over time, talking about the cancer got easier — or maybe I just got used to it. And over time, my need for absolute control relaxed. I got through the double mastectomy, started chemo and widened my circle of “insiders.” I was still pretty stealth, wearing a wig and doing everything I could to pass as a normal healthy person: I didn’t want to deal with pitying looks from strangers on top of being sick and bald and boobless. But I also became more pragmatic. I was single and lived alone and needed as much support as I could get. 

It wasn’t until I was nearly done with radiation, eight months after my initial diagnosis, that I felt strong enough to have what I call “Facebook cancer,” to write — and post — about my breast cancer in a public forum.  For me, coming out with cancer was an evolving process, a flower slowly unfolding, even though the bloom was more skunk cabbage than chrysanthemum.

But not everybody handles their diagnosis this same way.

Some slap their cancer out there immediately, like Jimmy Carter, Joan Lunden or “Good Morning America” host Amy Robach, who was practically diagnosed on live TV. Others keep it almost entirely to themselves, like David Bowie, actor Alan Rickman or Jackie Collins who died without telling even her sister Joan about her stage 4 breast cancer.

Sharing news about your cancer is complicated and, for some (think parents who have to tell their young children), it can create almost as much stress as the cancer diagnosis itself. What issues are at play and what kind of reactions can you expect? I tapped a handful of experts and patients for their insights and advice.

There’s no easy or right way to do it

Sharing a cancer diagnosis is messy — and there’s really no easy or right way to go about it, said Dr. Bonnie McGregor, a public health researcher and psychologist with Fred Hutchinson Cancer Research Center. She also noted there’s also no need to tell anyone if you’d rather not share.

“It’s important to pay attention to what you need,” said McGregor. “Think about what you need and who you’re talking to and what kind of support they’ll be able to give you. Some people can provide practical and tangible support. Others are good with emotional support — these are the people you can talk to about your fears. Others are good with companionship. They don’t want to go too deep emotionally but boy, they’ll go shopping or take you to a movie.”

After stumbling through those first few phone calls, I began writing down key points I needed to get across, almost like a script, so I could quickly and efficiently share the news without blurting out too much or forgetting something altogether.

While some swear by only telling people face-to-face (crucial with small kids), I came out all kinds of ways: in person, on the phone and via email, text and social media. In retrospect, I might have done this differently: one friend I told via phone collapsed in the middle of the street (her father had died of cancer a few years earlier), but it’s hard to think of everything when you’re shell-shocked.

I did soon learn that if I remained calm and upbeat, others would usually do the same. So I tried not to share my news on the days when I felt too overwhelmed.

Delegate, delegate, delegate

You don’t have to do all the dirty work of spreading the news yourself.

I tapped people to help me spread the word from day one (hour one, to be exact), then moved on to group emails and eventually, started a blog. Other patients I know designated a spouse, significant other or parent as their “information officer” so they could focus all their energy on treatment and recovery rather than running Cancer News Central. 

Dr. Julie Gralow
Dr. Julie Gralow Fred Hutch file

If you’re not the blogging or emailing type, patient websites like Caring Bridge let you post regular updates on your status. Remember, it’s not just about breaking the news of your diagnosis, it’s also about managing the ongoing tsunami of questions regarding surgeries, treatment, test results, etc. 

“A site like Caring Bridge allows you to control what’s going out,” said Dr. Julie Gralow, a Fred Hutch clinical researcher and breast cancer oncologist at Seattle Cancer Care Alliance. “You or your family can choose to share what you want and the site is restricted, so not just anybody can look at it. And people can send you positive messages.”

Facebook cancer

Speaking of messages, there’s Facebook, where many share their diagnosis these days.

On the plus side, you’ll get immediate social support — from prayers to proffered meals to practical advice from others who’ve been there. It’s efficient, immediate and you don’t have to have the same cancer conversation again and again.

“Only having to tell the basic story once via social media and group email was easier, emotionally, than the difficult and exhausting process of many, many phone calls,” wrote Frank Catalano in an excellent essay about sharing his wife’s cancer news via social media.

On the down side, you may also get crackpot theories about how you can cure cancer with baking soda or critiques about your treatment choices (this happens in the real world, too). Some people may post “blamey” articles on your wall about the link between cancer and, say,  processed meat (usually right beneath your Fourth of July barbecue pics).

As with all things in life, Facebook can be a mixed bag.

When bladder cancer survivor Lisa Lindstrom, 46, found out she had breast cancer last year she worried she might be judged by her online family. 

“I felt insecure, like, ‘What will people think when they find out I have another malignancy?’” she said.

But the Seattle grant writer finally went public and is now glad she did.

“It’s up to each person’s comfort level, but for me, coming out about my cancer has been a very positive and uplifting experience,” she said. “When I feel anxious and not entirely myself, I reflect on the lovely words people wrote. I feel connected to something bigger than myself and this all seems a bit more manageable.”

Secret cancer

Not everybody feels like sharing, of course.

Some people are extremely private or they just want to feel as normal as possible and once cancer’s out of the bag, you will be treated differently. Others are concerned about stigma (think lung cancer patients who constantly have to field questions about smoking). Or they worry a diagnosis will jeopardize their job — or more importantly, their insurance coverage.

Bonnie McGregor
Bonnie McGregor Fred Hutch file

One of my breast cancer buddies scheduled all 33 of her radiation treatments during her lunch break so her highly-competitive coworkers wouldn’t know what was up. Two more, both diagnosed with stage 4, use private Facebook and Twitter feeds to discuss the dark details of cancer while their public feeds remain sunny and bright. The reason? Both own their own businesses and can’t afford to lose clients.

“It’s not uncommon to have people be very stealth about it at work,” said McGregor.

Thanks to wigs, prosthetics, makeup and good nausea and pain meds, secret cancer is doable. But there’s a trade-off to keeping cancer on the down-low.

“If you want to keep it secret then you won’t be able to benefit as much from the support,” said McGregor. “I have a lot of respect for people who can’t talk about [their cancer] because it’s helpful to be able to talk about it and it takes energy to keep secrets. And energy is like gold when you’re a cancer survivor.”

Blabbermouths and boneheaded remarks

Keeping cancer a secret also means relying on your inner circle to keep their traps shut. And there’s the rub.

When Rebecca Matos, a 30-something project manager from New York was diagnosed with breast cancer, she shared the news with her mom and a few close friends. But one of those friends told others who told others — bad news travels fast — and Matos soon found herself inundated by phone calls and emails, including one from a childhood friend who chastised her for keeping quiet.

“She said awareness was important and I wasn’t doing the ‘right thing’ to help other women,” said Matos. “I told her I had to do my cancer my own way and asked her to keep it quiet but she  started spreading it everywhere. Now everybody knows — I have a blog — and that’s OK. But it’s about timing. People need to understand that. Patients are entitled to handle their cancer mess the way they wish to. One way to help a patient is to respect their wishes.”

Cancer patients don’t just have to deal with loose lips and lack of respect, though. There are also the inevitable snoopy questions.

“What stage are you?” people asked me after I went public. “What are your odds?”

At first, I would answer as best I could, even when the questions came from strangers. These days, I’ll either deflect — “I call it stage WTF” — or will simply tell them it’s none of their bees wax. Because it’s not. 

“There’s a very narrow group of people who deserve to have some idea about [staging or odds] so they can help and support you,” said Gralow. “But for the average friend or peripheral person, it’s up to the cancer patient to divulge what they want to divulge.”

But people aren’t just snoopy. Some will also catalog for you every person they know of who died of your cancer. Or they’ll tell you what a “gift” the disease is. Or they’ll make it all about them.

Michelle Meeker
Michelle Meeker Photo courtesy of Michelle Meeker

“The best ones would be when you’d tell someone and then you’d spend the next 20 minutes making them feel better,” said Seattle colon cancer survivor Michelle Meeker. “One friend said, ‘If they give you a colostomy bag, I don’t know if I can handle that.’ I’m like, ‘YOU can’t handle it?’”

McGregor said responses like this aren’t meant to hurt, they’re just the result of peoples’ brains going temporarily haywire.

“When we’re confronted with something that’s fearful to us, like the possibility of losing a friend to cancer, our brains don’t operate as well and we say stupid things,” she said. “Giving [friends] the benefit of the doubt is a kind thing to do. They’re not thinking clearly because they’re worried about you.”

Friends may freak and strangers will step up

Fear can also drive people away.

When I came out, most of my friends were 100 percent supportive, but a guy I was dating scurried off into the sunset and two longtime gal pals simply disappeared. I won’t lie: this behavior — known as “ghosting” in the dating world — was painful. It was also quite illuminating as to who my real friends were.

But here’s a little cancer secret: for every friend that takes a powder, there are usually three or four casual connections who will step up to help in wonderful ways.  People I barely knew sent me books, pies, flowers, food, a handmade blanket. It was incredible and humbling.

It’s also common, said McGregor.

“People you don’t think of as very good friends will step up and help in ways you can’t imagine,” she said. “One woman [had] a coworker she didn’t know all that well offer to bathe her dog once a week. It was the most important thing anybody did for her.”

As for those dear friends who fade, McGregor said it’s not about you, it’s about them.

“They may have their own feelings of grief and it’s hard for them to imagine [you] being sick,” she said. “Or they’re not sure what to do or say. Cancer can be scary and you don’t know what buttons are going to be pushed in friends and family members. One of the issues we talk about in our [patient support] group is that not everybody can meet your needs.”

But even if others aren’t there for you, McGregor said, you will be.

“When you get a cancer diagnosis, you have to confront your mortality and there’s something in doing that,” she said. “It pits you against something really big and you strengthen your emotional muscle. You get a new yardstick, as far as what you can handle and what’s important and what’s not.”

Read the transcript of our Tweet chat about coming out with cancer.

What was your experience of "coming out" with cancer? Tell us on Facebook.

Diane Mapes is a staff writer at Fred Hutchinson Cancer Research Center. She has written extensively about health issues for NBC News, TODAY, CNN, MSN, Seattle Magazine and other publications. A breast cancer survivor, she also writes the breast cancer blog doublewhammied.com. Reach her at dmapes@fredhutch.org.

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