How to announce cancer on facebook
Patients, experts discuss ins and outs of sharing a diagnosis
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From going public on Facebook to friends who ‘ghost,’ patients and experts discuss the ins and outs of sharing a diagnosis
January 8, 2016 • By Diane Mapes / Fred Hutch News Service
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.
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 Fred Hutch fileIf 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 Fred Hutch fileOne 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 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 [email protected].
Last Modified, October 05, 2022
Finding a good way to share really bad news on social media – GeekWire
I’m about to overshare on sharing.
Frank and Dee Dee in Stockholm: the dual selfieI have good reason. In mid-June, my wife Dee Dee was diagnosed with breast cancer. Among the many hard decisions we had to make was how, and when, to communicate the sensitive news in a culture overrun with social media oversharing.
Spoiler alert: She’s doing quite well. Tiny tumor, lumpectomy, chemo avoided, radiation completed, and now five years of tamoxifen hormone therapy. Aside from the initial shock and the deeply unnerving, continuing unknowns, the most troublesome side effect was radiation-induced sunburn in areas normally covered by clothing.
Especially to a redhead whose fair skin tends to be smothered in sunscreen.
We also discovered that social media can be simultaneously an ally and enemy, and there are ways to tip the balance in one’s favor while avoiding the pitfalls.
Create a sharing frameworkAt the time of the diagnosis, Dee Dee and I were active on Facebook, Twitter, LinkedIn and blogs. Friends, family and acquaintances were used to getting personal updates and obligatory cat photos en masse. We realized we couldn’t cut off the communication channels (rumor so loves a vacuum) but we should manage them.
So before sharing any difficult medical news, you might start by answering seven questions we developed:
- Who needs to know?
- How much do they need to know?
- Will the news and any updates worry them or comfort them?
- What’s the best way to let them know?
- Who will create the updates to be shared?
- Will you care if the information is shared further?
- How much more information are you willing to share if someone contacts you directly?
Our answer to the first question meant silence wasn’t an option.
“I knew there were people on Facebook who would care and would want to know, and they were people I didn’t have direct contact with often,” Dee Dee explains. “I also felt that breast cancer was a momentous enough event in my life that saying nothing felt strange and somewhat dishonest.”
But tone, it turned out, was critical in addressing the second and third questions. Staying both positive – and truthful – were clear directions. “I didn’t want to freak out my friends, and frankly I was trying to be positive for my own sake,” she notes.
Because this was Dee Dee’s news and only peripherally mine, we stayed focused on Facebook as the best communications channel – that’s where her contacts congregated. Unlike Twitter, blogs or some other social media networks, there was some slight ability to control who saw the updates.
Neither of us were naïve, either, both realizing that once something was posted, all it took was a clicked “Share” or cut-and-paste to make it public.
As a result, Dee Dee says, “I decided to share what I thought was the most important information: diagnosis, treatment plans, how each treatment step went and how I felt afterwards, and important decision points or results. Do I need chemo? How long would radiation last? What would be the side effects?” Always, if possible, with an optimistic spin.
We also created something of a communications hierarchy, adding an email group for two dozen family and close friends who needed more frequent or detailed updates.
Oh. And an over-communicative husband (me) wound up as what Dee Dee describes as her “primary spokesperson.” I drafted email updates for her approval when she was fatigued or quietly upset. Having a second party to help with the communication task saved her the effort and “gave him a very useful role that he was very good at.” (Really. She said that.)
The last Facebook postLearn lessons – and consider cautionsIn our case, the reactions were relief – on both sides.
Ten Facebook updates were shared over three months, mostly from Dee Dee’s profile, and many more group emails were sent. Responses, Dee Dee notes, were uniformly supportive and, “Some people shared their own breast cancer stories, or those of friends and family, and those kinds of success stories were very encouraging to me.”
Not just that, but 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. That energy was saved for any personal follow up.
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. That energy was saved for any personal follow up.However, don’t forego all direct human contact.
On a broader scale, Group Health Cooperative social media manager Katie McCarthy sees how medical conditions are shared socially. She has seen it done well.
And, apparently, very poorly, leading to advice that might be summed up as three “don’ts.”
Don’t ignore the phone or face time. Before composing that first social media post, inform those closest to you of the news you will be sharing. McCarthy says think about, “Who should I let know before I let the world know?” (McCarthy herself has some experience with this, finding out only on social media about a close relative’s medical situation. Dee Dee called siblings and her best friend first.)
Don’t suddenly go dark. Once you start posting, be consistent in continuing to post. You don’t have to be on a schedule for those you’re keeping informed, but McCarthy says “if you stop doing updates, they’re going to get more concerned.”
Don’t unexpectedly be weird. “Think about when you’re going to post,” McCarthy advises, and that doesn’t mean time of day. She cites the case of one person, having undergone brain surgery, whose posts took a worrying turn in tone and details.
The patient, friends discovered, was on prescribed heavy narcotics – and was posting after taking them.
Despite any comfort you might have with social media, realize it’s also not the best place to solicit personalized medical advice. Particularly in public. “I tend to see it when we post something on cancer care, for example,” McCarthy says. Patients “seem to come out of the woodwork” to talk about treatments and questions; “people will even tweet about their colonoscopies and tag us in it.”
Yet when it comes to conveying difficult medical news, social media can be constructively managed. You may not be able to control how what you post spreads, but you do control what you say and when and where you say it – even if it’s simply sharing one’s experience, and advice to others, in this column.
Facebook has deleted accounts with photos of a child allegedly suffering from cancer
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Image copyright, MERCURY PRESS
Image caption,Photos of Jasper went viral last August when he had chickenpox
Facebook removed two accounts that used photos of a sick child to raise money for his treatment of cancer. The pictures were taken last year when the boy had severe chickenpox. Now he is healthy.
Sarah Allen, the mother of three-year-old boy Jasper, contacted the technical support of the social network: she drew attention to photographs that, in her opinion, were used by scammers.
Facebook posts with a photo of the child said that the social network would donate money for the operation. The amount, according to the post, will depend on the number of people who have shared, "liked" or commented on the post.
As a result, more than 1.2 million people shared the post, and tens of thousands more commented or left "likes".
Sarah Allen's family lives in St Neots, Cambridgeshire.
According to Allen, the account owners took these photos from local media.
Last August the local press wrote a lot about Jasper's illness, as it was very severe. His mother then urged the government to provide free chickenpox vaccine to everyone.
"We've been warned that people can take these pictures...because when you Google chickenpox, those pictures are there," Allen told the BBC.
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What she didn't expect, however, was that the photos could be used to reveal that the boy had cancer. According to her, some friends specifically contacted her to clarify whether her son was sick.
Allen, in her own words, complained to Facebook several times about copyright infringement. On February 10, she was informed that one of their accounts had been deleted due to a violation of the rules for using the social network. However, after 24 hours it worked again.
Facebook has asked its complaints team to re-examine the case following media coverage, including the BBC.
Initially, the social network removed only posts with photos of Jasper. But those accounts featured similar posts with pictures of other kids. In some, the authors asked to share a post or leave a comment to raise money for treatment. In other posts, the authors also posted photos of allegedly sick children and predicted periods of bad luck for those who did not leave a comment or like.
The security expert explained that after a person leaves a comment or likes a post, scammers get the opportunity to send him messages and somehow interact with his profile.
Fraudsters, under some pretext, may try to obtain other personal information from the user, such as a mobile phone number.
Russian Facebook users were outraged by the illegal advertising of cancer drugs - Social networks on vc.ru
By According to Belov, for several months he has been watching an advertisement for the “drug GA-40”, which, according to the ad, helps fight cancer.
It's just not funny anymore, I've been looking at GA-40 ads for half a year. Pseudo-drugs for cancer. Who is in charge of Facebook in Russia? Stop this process, people profit from disease and despair.
CP consulted with a lawyer Sevan Avalyan regarding online advertising of medicines of a dubious nature. According to him, in Russia it is obligatory to obtain a Russian license for the production of medicines, and registration of medicines in the Russian Federation is also obligatory before releasing them into free circulation in the country.
There are no certificates, licenses, certificates of conformity published both in the advertising block and on the website of the medicinal product. Based on the norms of the law and the lack of state registration, the drug is distributed illegally.
The issue under consideration is also regulated by the Law of the Russian Federation "On Protection of Consumer Rights". The company's website violates the rules of articles 4, 7, 8, 9 and 10 of the named law, which secure the consumer's rights to proper quality, safety, information about the manufacturer, information about the product. Sellers mislead consumers, which can cause serious harm to health and lead to the prosecution of those responsible.
The federal law “On Advertising” regulates the legality of the ad in question being placed on the platform of the advertising distributor – Facebook. The controversial ad block violates the requirements of paragraph 8 of part 1 of article 24 - "Advertising of medicines should not guarantee the positive effect of the object of advertising, its safety, effectiveness and the absence of side effects.
" Part 6 of Article 24 establishes that the message in advertising about the properties and characteristics, including methods of application and use, of medicines and medical devices is allowed only within the indications contained in the instructions approved in the established manner for the use and use of such objects of advertising.
Part 7 establishes that advertising of medicines, medical services, including methods of prevention, diagnosis, treatment and medical rehabilitation, medical devices must be accompanied by a warning about the presence of contraindications to their use and use, the need to read the instructions for use or obtain expert advice.
In advertising distributed among other things through the relevant Internet services, such a warning must be allocated at least five percent of the advertising space.
— Sevan Avalyan, lawyer
Facebook employees also took part in the discussion initiated by Belov.
Anna-Maria Treneva, in charge of advertising in Eastern Europe, advised the investor to click on the cross in the upper right corner of the advertisement to mark it as inappropriate and hide it. In response, Belov noted that he would like to hide it for everyone, because this is a "divorce", but he ended up on Treneva's "black" list. At the time of publication of the note, Treneva had not responded to the CPU's request.
Facebook Representative in Russia Ekaterina Skorobogatova stated in the comments to the post that the staff understand the situation.
Subsequently, Belov stated that he plans to apply to the European office of the company. In a conversation with the CPU, Belov told how exactly he intends to proceed.
Facebook employees don't want to or can't do anything about it?
As I understand it, they don't want to, and they can't. I have two ways left: a complaint to the relevant departments about drug websites (I am already preparing this with a lawyer) and a complaint to the relevant departments on Facebook (waiting).
The second way is a letter to the Facebook manager who oversees the Russian office. His contacts have already been given to me by friends from the American office of the corporation. Haven't started the process yet.
We are waiting for the reaction of the Russian office: it is important for me that this type of advertising is completely absent from Facebook. This is immoral, in addition to violating the drug advertising law.
This ad first appeared?
If you look at my post, then there is next to it now There is a second such advertisement. Never seen anything like it before. But this may be due to the effect of blind spots, when you do not see ads at all. And biotech is my weakness, so I paid attention. And this advertisement has been hanging for several months.
You are starting a kind of crusade against unscrupulous advertisers and silent Facebook. How do you rate your chances of success?
No crusade, just citizenship.
Several of my acquaintances have gone through a difficult period of fighting cancer, and I have visited leading clinics and R&D centers to combat this disease. And I know that people are ready to believe any charlatan, just to cure a loved one. So this is a normal civic position and the 10% that each of us should spend on society and the environment around us.
Perhaps this will save someone's life, since he will not waste time on an expensive placebo, but will immediately go to the clinic. And if, as a result, the Russian office gets more powers and employees and works for the benefit of network users, great
Who and how can be held liable in this case?
Honestly, I don't know yet. I booked a consultation with a specialized lawyer, I'm waiting for a response. I guess the easiest way is to sue Facebook for posting inappropriate ads, but I wouldn't want that. But to attract the manufacturer and distributor of this "badyagi" is most likely impossible.
