Common enough to have been coined 'cancer ghosting' - a form of social isolation and loss of support – even from close friends and family members – is a devastating and often unrecognized side effect of cancer, and can be more painful than treatment, survivors say.

It's especially jarring for young patients, who have fewer peers with experience of major illness and appreciation of its many tolls.

In a conversation with Zack Wittman for NPR, survivors open up about ‘ghosting’.  

Chelsey Gomez, diagnosed with Hodgkin lymphoma at the age of 28 talks about how after sharing their diagnosis with friends and loved ones—poof! — they disappeared. They stopped calling, stopped texting. They didn't check in. Gomez says what hurt most was confronting the idea that – to these people she loved – she did not matter. "That is the most painful thing, because you're sitting there thinking, 'Oh, I must've been a horrible person,'" Gomez says.

This experience is not uncommon. With a growing population of 18.1 million people experiencing cancer survivorship, nearly every patient has a story of being ghosted by people they're close to, says social worker Carissa Hodgson. While the disappearing act feels like cruelty, she says, people who ghost usually do so because they're unable to manage their own fears. They often get tongue-tied, or afraid of offending the patient, or caught up in confronting their own fears. 

While this can be daunting for many, support can actually be quite simple. 

Checking in to say 'Hey, are you okay?' can go a long way to reassure pateints & early survivors that what they’re going through is difficult, and that their community is there for them to lean on and stand behind them.  

According to Arif Kamal, chief patient officer at the American Cancer Society, even simple messages like, "I'm thinking of you," can really matter. He also says practical support is often best when it's very specific, like: "I'm picking up a pizza for my family tonight. I'm going to pick one up for you as well. Do you still like pepperoni?"

"Peoples' social support, if they have it, over time will go away," he says, noting research from the cancer society showing more than half of patients feel socially isolated when they are diagnosed, and more so during active treatment. "Cancer is a rallying factor for some, not all. But there's an expiration date to that rally." 

Our goal at Maitri is to bring the power of community to cancer journeys, both during treatment, in the early days of survivorship, where both mind and body are still coming to terms with what it means to be a survivor. Our platform enables patients to curate a support system that is sustainable, allowing them to clearly communicate specific needs, and watch as friends, family and loved ones rally behind them in their time of need. 

Listen here: https://www.npr.org/2024/12/18/nx-s1-5179011/cancer-ghosting-survivorship-young-survivors