After receiving a cancer diagnosis, it’s natural for some people to want to share the news with friends, loved ones and colleagues. For others, sharing much less information, or keeping their diagnosis a secret from some, feels like a better way to go.
Trying to figure out who to tell – and how much information to disclose – is a complicated and occasionally fraught process that every cancer patient goes through. And while there’s no one-sized-fits-all approach, experts generally agree: it is your story to share, or not share.
“At the end of the day, your health information is private and you don’t have to feel obligated to tell anybody you don’t want to tell,” said psychologist and UW Carbone Cancer Center member Erin Costanzo, PhD. “Many people do feel a sense of obligation to let people know, but decisions should be made on a case-by-case basis about what makes sense for that individual person.”
A member of UW Carbone’s Cancer Psychology Clinic, Costanzo helps patients through some of the difficult questions, like: What do I tell my friends? What about my co-workers? Do I have to talk to people personally or can I get away with just posting about this on social media?
It’s a lot to deal with, especially in the immediate aftermath of a life-changing cancer diagnosis, which may explain why some hold back.
“One thing I commonly hear from patients is that it’s emotionally painful and even re-traumatizing to have to share that information over and over again with people,” Costanzo said. “Then, once others know, they often have that expectation for updates. Sometimes people choose not to tell others because they don’t want to be asked about their cancer all the time or feel like they need to give reports to everybody.”
There are also other reasons – valid reasons – that people might hold back their cancer news. Fear of judgement or even blame from others might keep patients from sharing their diagnosis. Maybe a previous interaction with a well-meaning relative went wrong, or somebody offered a piece of unwanted advice, which can frequently have unintended consequences.
“I think it’s well intentioned and meant to help, but advice may be completely irrelevant to a patient’s situation and diagnosis,” Costanzo said. “The advice giver wants to fix it in some way, which often comes across as invalidating to the patient.”
Then, there’s often our own concern of not wanting upset anyone with distressing news. Many Midwesterners are likely familiar with this phenomenon, and Costanzo has seen it herself, but she pushes back on the idea that people “can’t handle” bad news or don’t want to hear it.
“What we know is that most people are pretty resilient and can handle information and deal with emotions that come along with it,” she said.
That applies to kids, as well. While some parents with small children may be hesitant to explain why mommy or daddy isn’t feeling well, Costanzo says honesty is often the best policy. “With rare exceptions, we encourage parents to tell their children,” she said. "Unintended consequences of keeping the cancer diagnosis a secret are that kids may find out some other way. And since kids can have very active imaginations, they may actually imagine something much worse than the truth.”
There’s also the workplace, which can be an incredibly tricky area to navigate. Cancer patients frequently must take time off work for treatment, which can lead to questions from co-workers. Costanzo says a good first step is to meeting with human resources, who can help put a communication plan into place that either mentions cancer – or doesn’t.
For patients who do want to openly talk about their diagnosis with their network, regardless of relationship, Costanzo says communication via the internet can sometimes be helpful. Through an email blast, social media post or blog entry, patients can talk to a mass audience, all at once, without having to re-experience a potential trauma over and over. Patients can also control the narrative, and worry less about people hearing the news through the grapevine.
“It doesn’t mean you need to tell everyone right away, but having a little bit of information control can be a good thing,” Costanzo said. “And telling people can actually be somewhat empowering.”
It can be difficult to open up and share such personal information with people, but Costanzo says there are benefits. Occasionally, friends and family members may be inspired to go out and get their own cancer screening after hearing someone else’s story. And chances are, most people will be supportive when told someone has cancer, which is actually more significant than one might think.
“There is research to indicate that having close connections with other people and having reliable supporters not only helps a patient’s mental health, but there’s evidence that we see better cancer outcomes,” Costanzo said. “So that support is a really important piece of cancer care.”