From Facebook to Face-to-Face: How Cancer Support Works Now

Written by Hallie Levine
Medically Reviewed by Lalitha Kadali, MBBS, MD on May 08, 2026

Jane Perlmutter, 77, has battled several different cancers in her life, including breast, esophageal, and then non-small-cell lung cancer (NSCLC). But her diagnosis of breast cancer in 1985 was starkly different from her diagnosis of NSCLC 40 years later.

“In the 1980s, people didn’t talk about cancer — it was literally the c word,” recalls Perlmutter, who lives in Ann Arbor, Michigan. “My parents refused to tell anybody. It was really traumatic for me.”

But when she learned she had NSCLC in 2022, it was a different story. “The social workers at my oncologist’s office offered to connect me with other NSCLC patients,” Perlmutter says. “I went online and found all sorts of virtual cancer support through organizations like the LUNGevity Foundation. It really is a different world.” 

NSCLC can be a devastating diagnosis. It may feel like your world has turned upside down. It’s normal to feel sad, fearful, anxious, or even numb. 

One of the best ways to deal with these emotions is to seek out social support. It can help to share your concerns with others, especially people with the same diagnosis. Research shows that strong social support improves the quality of life for patients with lung cancer.

But the right support looks different for different people, notes Perlmutter. She had a close personal friendship with the head of the University of Michigan Cancer Center, where she got treatment. She also had friends who reached out and offered to connect her with others who had a similar diagnosis, which in her case was NSCLC with no mutations. “I found that word of mouth worked better for me than going to a traditional in-person support group, or joining one on Facebook or another form of social media,” she says. 

Thankfully, in today’s digital world, you can find a variety of in-person and virtual ways to connect with others, whether it’s a support group, volunteering, fundraising, tapping into existing friendships, or even attending a patient advocacy conference. 

Here, several NSCLC survivors share their success stories of finding life-changing support systems, including friendships, as well as where to look to find the best network for you. 

Support groups are an important way to connect with other NSCLC patients. They can help relieve some of the anxiety that you feel around diagnosis, and give you a roadmap of what to expect on your treatment journey. Research also shows that they help ease distress, too.

Jeanne Szurek, 69, used online support groups as a way to connect with other patients who had stage IV NSCLC. “I was too sick initially to attend in-person events, but the virtual ones were amazing,” says Szurek, who lives in St. Paul, Minnesota. “I remember the first time I was in a LUNGevity weekly online meetup, and I was in a chat room with dozens of other lung cancer patients and survivors. You could ask any question about your diagnosis or treatment, and someone there would be in the same boat as you. There was just so much encouragement and positivity. It felt like we were all in this fight together.”

There are so many support groups around that you can even find ones focused on a specific lung cancer mutation.

 

Most support groups, whether they are in person or online, have a similar structure. They are led by someone, either a patient advocate or a health professional like a nurse or social worker, who guides the conversation. You’ll have the chance to share your story and ask questions.

Your cancer center may have in-person support groups that you can join. You can also reach out to your local chapter of the American Lung Association to see if they have one near you. But national lung cancer organizations offer virtual support groups, too, which usually meet monthly or even weekly. These include:

Groups like LUNGevity also offer online message boards, forums, and Facebook groups. But it’s important to be very careful when you are on social media, warns Perlmutter. Stick to those run by reputable lung cancer organizations or medical centers like the three listed above. “There’s so much misinformation online, and you want to make sure that whatever information you’re getting is fully vetted,” she advises. 

If you feel shy about support groups or online forums, another option is a peer-to-peer mentor program, where you’re matched to a lung cancer survivor who has had a similar experience. LUNGevity offers a Lifeline Support Program, and the American Lung Association has a Mentor Angel program. 

Support groups can be very helpful for some people with NSCLC, but they aren’t for everyone. You may feel like you don’t “click” with certain members of the group, or you may feel like a group is too negative or spreads misinformation. Here are some other ways people with NSCLC say they’ve found great support:

Tapping into existing networks. Steven Scansen, 76, was diagnosed with stage II NSCLC in 2021.  But he already had a built-in support group of sorts with his tobacco cessation support group. “I had really relied on them to help me stop smoking, and they stepped up when I got my lung cancer diagnosis,” Scansen, who lives in Lancaster, California, recalls. “I was feeling very negative and down at one meeting, and one woman said to me, ‘You’ve taken care of the hard stuff! You’ve quit smoking, and you found your cancer early.’ It gave me the perspective check I needed.”

Volunteering. After Dianne Guy, 72, of Bel Air, Maryland, was successfully treated with immunotherapy for her stage IV NSCLC at the Kaufman Cancer Center at the University of Maryland, she began to volunteer at its gift shop. “I have gotten to meet so many different cancer patients as they go through treatment,” she says. “They stop in and say hello each week on their way to chemotherapy or radiation, or to their doctor’s appointments. I don’t even know some of their names, but we have this instant bond because we’ve all gone through the same shared experience.” 

Fundraising. Nick Corvinus, 78, found support after his stage IV NSCLC diagnosis in 2019 through a cancer community he had already been part of for decades – The Pan-Mass Challenge (PMC). “I’ve met an awful lot of people through the PMC over the years, and they really stepped up during my treatment journey,” says Corvinus, who lives in Newburyport, Massachusetts. One of his friends helped him get an appointment at the Dana Farber Cancer Institute in Boston, where he learned he had a very rare lung cancer mutation called RET — seen in less than 2% of all cases of lung cancer. “I was able to access a clinical trial I otherwise wouldn’t have known about,” he says. 

It can be hard to participate in exercise events with an NSCLC diagnosis. Corvinus still participates on his own as a Living Proof rider, which is a group of cyclists and volunteers who were previously treated or are currently undergoing treatment. “I can’t participate in the actual PMC anymore, but I ride about 2,000 miles a year, on bike paths with PMC friends in the summer, and indoors in the winter,” says Corvinus. “It’s kept me connected to friends on my team, and given me a sense of purpose.”

When Maggie McCloskey, 64, was diagnosed with NSCLC in 2021, she coincidentally had two close friends who had both been diagnosed with two different types of cancer. “One had breast cancer, and one had ovarian cancer, but we all seemed to speak the same language,” says McCloskey, who lives in Moraga, California. The three of them would meet for lunch every couple of weeks to discuss their treatment journey and their new realities. “It really helped us, especially since many of our other friends just didn’t seem to understand,” says McCloskey.

McCloskey also relied on her two friends to occasionally accompany her to doctor’s appointments, to provide an extra set of eyes and ears. “I walked around in such a fog initially that their presence was helpful,” she explains. “They would hear things my mind couldn’t process, or ask questions I hadn’t thought of.”

Cancer diagnoses can often reshape friendships. Up to 90% of patients with lung cancer report something called cancer “ghosting,” where friends or family pull away. “People are uncomfortable, and they don’t know what to say, but as a cancer patient, it can be unbelievably painful,” says Perlmutter.

But while this may happen with some friends, you may be pleasantly surprised by others. Scansen found an unexpected source of support from a group of his former co-workers. “I was a chief in the air force in the 1990s, and I had a whole team that worked closely with me,” he recalls. Even after he retired, they stayed in touch. A few days after he told them about his cancer diagnosis, they organized a conference call. 

“My team told me that the one thing they remembered about our time together was how positive I was,” he says. “They told me, one after the other, that I couldn’t lose sight of what I was after. That really stuck with me and helped me keep a positive attitude throughout my treatment.” They also organized a phone tree, so each team member could take a turn talking to Scansen while he went through grueling chemotherapy. “I hadn’t seen most of them in years, but they made it seem like an honor to help me get through my cancer journey,” says Scansen. 

Many national lung cancer organizations offer the opportunity to connect with other patients at annual conferences, either in person or virtually. The LUNGevity Foundation, for example, hosts an annual HOPE Summit where patients with lung cancer, survivors, and their caretakers can meet and offer each other support. They also host a virtual event, the International Lung Cancer Survivorship Conference, every few years, where patients and survivors with lung cancer can connect online.

“It’s incredible to be in a room surrounded by people with the exact same diagnosis, who have similar lived experiences,” says Frank Sierawski, 46, a patient advocate with stage IV NSCLC in Omaha, Nebraska. 

You can also form lifelong friendships. Kelly Graham-Miele, 66, didn’t feel comfortable talking to family and friends about her NSCLC diagnosis, especially since she was a former smoker. “My kids were fairly young – 16 and 13 – so it was a lonely few years,” says Graham-Miele, who lives in Winnipeg, Canada. 

Then she attended a national conference through the Canadian Lung Health Foundation and connected with two other survivors. They met up again to do advocacy work at Canada’s national capital, Ottawa, and eventually all visited each other’s homes across the country. But the highlight of their friendship was when the trio all flew to Arizona to visit  Graham-Miele’s daughter at college. 

“When I was first diagnosed, I worried I wouldn’t make it to my daughter’s high school graduation, and suddenly I was watching her at university,” says Graham-Miele. “I felt it was a moment only another lung cancer survivor could understand.” 

If you want to attend a national conference, the LUNGevity Foundation’s HOPE Summit is a great place to start. Other options include:

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