Hutch News

Keeping cancer a secret

Why some patients don’t divulge their diagnoses — and how oncologists guide them through their chosen seclusion

Aug. 29, 2016
secret cancer

Illustration by Kimberly Carney / Fred Hutch News Service

She chats with neighbors who think her worst ailment is a food allergy. She posts Facebook selfies, looking blond, slender and youthful. Her followers believe she’s the epitome of health. She keeps up with friends. Few know of any dark clouds in her life.

But she has a massive secret — stage 4 breast cancer, a metastatic recurrence, diagnosed one year ago.

Despite living in this tell-all, social-media age where more people seem comfortable discussing or tweeting their sniffles, scans and, for some, their cancers, this 43-year-old woman decided to reveal her illness only to a super-select few. She told her family, a handful of close friends and some of the men she dates. That’s it. The inner circle is tiny and tight, with no leaks. 

Her silence is driven by a desire not to have cancer identify her, even though treatment initially took her hair (she used makeup and earrings to create a distinctive “look” that some thought was a style choice). She never wants to see even a flash of sorrow in the eyes of a friend. She prefers never to hear a single, somber “how are you doing?” — a caring question nonetheless laced with the undertone that she’s fragile.

We’re all fragile, she believes.

“Hiding is not the agenda. The agenda is just making it safe to go through this and not have cancer be at the forefront of all of my days,” she said. “It’s just something I’m going through, not who I am. I realize it’s something I will probably be dealing with forever. But I don’t want cancer to be my life.”

She has found two places to publicly share her hardest days and happiest milestones — a blog called everythingleadstothis and on twitter as “43 year old woman.” She does it all anonymously. A writer by trade, her posts help her “process what’s going on” and keep her “honest,” she said. Because in that format, there’s no need to sugarcoat, no reason to put on a brave face.

On her blog, she confessed: “I don’t want anyone to know but I want everyone to know.”

“It is,” she said in an interview, “a weird paradox that’s inside of me.”

That paradox might perfectly capture the mindset of many who keep their cancers largely under wraps. Sure, some cancer patients are highly private by nature. Given their emotional makeup, they likely wouldn’t whisper aloud their cholesterol count much less their diagnosis.

Why some don't tell  

But even those who are typically open find logical reasons to opt for cancer confidentiality soon after getting the bad news: not wanting to burden friends, not wanting to alarm folks they love, fearing judgment for cancers linked to lifestyle choices, hoping to avoid awkward conversations, seeking not to jeopardize their job, and hoping that managing the news helps them to control what seems like an uncontrollable situation.

“Yes, I hear all of these,” said Dr. Jesse Fann, director of psychiatry and psychology services at Seattle Cancer Care Alliance, the treatment arm of Fred Hutchinson Cancer Research Center. “Some say that they don’t want others to ‘pity’ them, or don’t want others to ‘treat them differently.’ Some just don’t know how to bring up the topic. Some don’t want to sound like they are whining or complaining all the time.”

But these days, secret cancer seems to be a choice made less commonly by individuals as communication regarding various cancer types and treatments grows more prevalent “in the media, in everyday conversations and through social media,” Fann said. 

About twice a year, on average, newly diagnosed patients will tell Dr. Bart Scott they want absolutely nobody to know they have cancer.

Dr. Bart Scott

Dr. Bart Scott

Fred Hutch file

“I’ve been in situations where I went in to talk to family members and the patient will ask their wife or their kids and loved ones to leave the room before we talk,” said Scott, a physician at Seattle Cancer Care Alliance and a researcher at Fred Hutch whose lab interests include clinical trials for myelodysplastic syndrome and myeloproliferative disorders.

“Usually, it’s men who have been the leader of their family not wanting their wife or kids to know about their diagnosis,” Scott said. “If the patient doesn’t want you to discuss their diagnosis or prognosis, you honor that. You say, ‘OK, fine, I respect that.’”

But in cases where people he’s treating are facing grave diagnoses, the oncologist will offer guidance that he’s found to be healthy for the patient and their loved ones.

“When it comes to end-of-life conversations, I’m just really honest with them: ‘This is what you can expect; you’re eventually going to become more debilitated, and it’s probably going to become obvious to your family members that you’re dying. It might be worthwhile to initiate some conversations with them now so they’re not so surprised that this is occurring,’” Scott said. “If the diagnosis is terminal and the family members aren’t prepared for that, what you find is there are a lot more unnecessary treatments and therapy given because the family is not prepared for their death yet.

“Once they recognize that from an intellectual perspective, it usually switches the situation around, and it opens the communication to a family. Because they’re not (staying secret) to be evil. They’re doing it with this misconception that they don’t want to burden the family members. But by keeping it a mystery it causes more stress than relief,” Scott said. 

In the psychiatrist’s office, Fann takes a similar approach. He validates a patient’s desire for privacy, whatever their reasons. Then, he explains that keeping their diagnosis fully secret may make it harder for them to ask for help when it’s needed — like getting a ride to treatment or grabbing a friendly ear to listen to fears, he said.

A doctor's advice 

“Holding stressful emotions inside without an outlet can lead to worsened stress, anxiety, depression and isolation,” Fann said. “I often ask, ‘Wouldn’t you want to know if someone you knew got a similar diagnosis?’ I acknowledge that it’s a difficult thing to talk about and often help them brainstorm and role play ways of bringing up the topic with others.”

Still, there are some famous cases of undisclosed cancers. Essayist and humorist Nora Ephron often lugged her own life into her writing — everything, that is, but her diagnosis of acute myeloid leukemia. After she died from a complication of the illness in 2012, some of her most intimate friends revealed they were in the dark about it, including actress Meryl Streep, who said:  “She really did catch us napping.” Musician David Bowie, who died in January of liver cancer, opted to keep the disease hidden — at least from the public — because he preferred to let his final album ‘speak for itself,’ according to Rolling Stone magazine.

Even science seems a bit divided on the healthiest road for cancer patients — full disclosure versus full (or semi) privacy, if that’s the preference.

Science of secrecy 

A 2004 quantitative study of 66 early-stage breast cancer patients found “failure to disclose concerns was associated with … low emotional well-being.” But in a 2002 paper on gender and cancer, authors found the significance placed on cancer patients being expressive emerged from research focusing on women — and is, therefore, influenced by assumptions about femininity.

For some patients, the decision to not be fully open is simply a cool, financial calculation. Many people with cancer are concerned that if workers or bosses find out about their true health, it may harm their job status. This brings a nuanced level of secrecy.

“A lot of survivors I’ve seen are open with their coworkers and HR departments that they’ve had cancer but they may not be as willing to disclose that they continue to feel those late effects or the fatigue after treatment,” said Leslie Heron, a nurse practitioner with the Fred Hutch Survivorship Program at Seattle Cancer Care Alliance.

“They kind of come back (after illness) and sign up to do more because they feel they owe it to their coworkers or employer to be back to normal,” Heron said.

Telling your employer

Then there are those patients who eventually want to return to the workforce following prolonged treatment. Some keep their health history ultra quiet to make themselves better job candidates.

One of those is Dena, 57. She was treated at Seattle Cancer Care Alliance for heavy chain amyloidosis, a condition where abnormal proteins are deposited in tissues or organs.

In 2011, she stopped working to undergo a bone marrow transplant. It worked but as she recovered, she developed severe aplastic anemia, a condition in which the bone marrow doesn’t make enough blood cells for the body. She underwent a second transplant in 2013, also successful.

She kept her illness largely confidential, telling a circle of family and friends, including her old manager at work. Dena didn’t want anyone researching her rare ailments. She wanted to protect them from what can be scary online reading.

Today, her health is good. She looks forward to returning to work after she’s fully off immunosuppression medication. But for this article, she asked that her last name not be published because she worried that coming out with her illnesses could pose an issue for job hunting.

“The last time I spoke with my old manager, when I was three years out from the transplant, I said to her, ‘If I get to the point where I’m off immunosuppression [drugs] and I could job hunt, how would you suggest I address this gap [in my job history]?’ She said, ‘I wouldn’t bring up the illness at all. I think it would be better for you to say something about spending more time with family and now you’re ready to get back into the work world,’” recalled Dena, who lives in the Seattle area.

“She felt it would potentially grow more challenging for an employer to want to hire somebody who’s had the health issue I had. Maybe it’s just that, as a hiring manager, that’s her perspective,” Dena added. “That conversation was at three years out. Now, I’m five years out. How would I address that gap? Maybe the same way.”  

'Don't want to feel pitied'

Her fellow traveler on the path of secrecy — the 43-year-old woman with stage 4 breast cancer — says, in time, she may change her mind and tell everyone. For now, she’s committed to navigating the situation with a handful of close friends and those who read her blog. (Metastasized cancer in her bone is progressing and her tumor markers are elevated, she posted on her blog in July.)

The few who do know her secret were carefully selected.

“When you tell people that you have cancer, it becomes a reflection of their mortality and it’s really challenging to feel like you’re having an authentic back and forth with someone,” she said in an interview.

“I don’t want to feel pitied. And I don’t want to just feel like I’m a reflection of somebody else. Those things sort of push my buttons. It’s really important when you have cancer to decrease any stress. Those things sort of annoy me. And any annoyance is not necessary for my health.” 

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Bill Briggs is a Fred Hutch News Service staff writer. Previously, he was a contributing writer for NBCNews.com and TODAY.com, where he was responsible for breaking news and covering trends in business, health and the military. Prior, he was a staff writer for The Denver Post and part of the newspaper's team that earned the 2000 Pulitzer Prize for breaking news coverage of the Columbine High School massacre. He has authored two books, including "The Third Miracle: An Ordinary Man, a Medical Mystery, and a Trial of Faith." Reach him at bbriggs@fredhutch.org.

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