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How I Found My Lung Cancer Community

Medically Reviewed by Neha Pathak, MD on January 09, 2021

I’m not sure I would have made it through this last year without it.”

“It’s about finding hope.”

“I always get way more from them than from any doctor.”

“I know they will stand by me, no matter what Igo through.”

These are the voices of lung cancer patients and survivors who find support, advice, and hope in groups created by and for people like them. They are different ages, races, and genders, and they have different types of lung cancer. Two things unite them: their disease and the belief that no one can really understand cancer unless they’ve been through it themselves. Tom McGuigan, an engineer in Washington state and a member of the LUNGevity support group, puts it this way: “My dream oncologist would be someone who survived cancer.”

What Support Groups Offer

Not all cancer support groups are the same. Some, like LUNGevity, welcome everyone. Others are geared toward people with certain cancer subtypes.

You can find small grass-roots startups as well as big organizations like the Cancer Support Community and American Lung Association. But most provide similar types of help.

Emotional support

Many people who have or had lung cancer say they wouldn’t have made it through the early days of the disease without the support of people who have been there.

The first year [after diagnosis] is an emotional rollercoaster,” says Michelle Rower, a former health care executive and competitive athlete who was diagnosed with stage IV lung cancer in 2018. “You have to face the loss of friends, colleagues, and daily activities. Everything about your life changes. It’s hard for people on the outside to understand.”

For Lou Torres, a patient and survivor in North Carolina, a lung cancer diagnosis was a shock. “You’re in a panic with your head spinning,” he says. “But a group of people who have gone on the same journey can provide real comfort. They speak from experience, not quoting tests or percentages or ‘expected outcomes.’ The group prepared me the way a soldier is prepared for battle, so I knew all I would be facing and was ready for it.”

If you need one-on-one support, many groups have buddy programs, which match you with someone with similar interests and challenges. Most groups also have resources or message boards for caregivers and families. This is important because emotional distress, especially depression, is common among caregivers.

Practical support

Support groups can be a great source for finding almost anything you need. Whether it’s a ride somewhere, food delivery, short-term housing, or learning more about disability insurance and the costs of treatment, support groups have you covered, says Cancer Support Community Executive Chair Kim Thiboldeaux.

The Cancer Support Community isn’t specifically for people who have lung cancer. It has (virtual) wellness classes and programs that may be helpful for anyone affected by the disease. It also has a 7-day-a-week counseling line staffed by social workers trained to work with cancer patients.

“We help you from step one all the way through the process,” Thiboldeaux says. “We spend as much time on the phone with you as we need to, and there’s no limit to how many times you can call back. Patients are always shocked because they’re used to 5-minute doctor visits. If our counselors don’t know the answer to a question, they’ll find out.”

Education and advice

Many people with lung cancer say they learn more about their disease from their support group than their doctors.

“These people understand my disease, its treatments, and mistreatments. They have useful tips and tricks that work,” says Tom Galli, a Texas-based moderator on the LUNGevity message board. “I still recall the suggestion that I eat a bowl of plain rice each morning before taking Tarceva [a chemotherapy drug that can cause diarrhea]. Tarceva laughed at Imodium but respected the rice.”

According to McGuigan, shared medical information helps patients learn about the latest treatments, the right questions to ask their medical team, and how to speak up for themselves. “It lets us advocate with more information and more intelligence,” he says.

Rower agrees. “Not everyone can be treated in a major academic center. [In the group,] you find out pretty quickly what the standard of care should be and what to ask for if you don’t get it.”

Finding Your Group

Many people with cancer find support groups through the internet. Galli joined his first group nearly 20 years ago, prompted by something he saw on TV. Annette Eyer, assistant vice president of patient engagement at the American Lung Association, suggests asking your care team or social worker about support groups in your area. “Often, patients receiving treatment at the same facility will start a lung cancer support group,” she says.

You can also contact the American Lung Association directly. It sponsors several support groups, some specifically for people with lung cancer.

The right fit depends on who you are, what you’re looking for, and sometimes, your health.

If you’re an introvert, LUNGevity’s message boards are “pretty perfect,” Rower says. “You can join the community and never have to post anything, but you can still read what others post.” She says younger people tend to prefer Facebook groups. But as with anything on social media, safety is key. “Be careful with your private health information,” Thiboldeaux warns. “Find out who owns it and what they’re going to do with it.”

The Cancer Support Community has a lung cancer discussion board too, moderated by social workers. It also sponsors weekly in-person groups. Thiboldeaux admits that these might not be everyone’s cup of tea. “We have a high level of sharing. If people don’t feel comfortable with deep sharing, there are other ways to connect, such as our cooking and yoga classes.”

Support Group Downsides

Thiboldeaux says that despite what you may think, support groups aren’t “a bunch of people sitting around whining and crying.” Still, she says, they’re not for everyone. Learning what survivors have gone through -- the very thing that makes them so helpful for some -- may be too much for others.

“There can be information overload, and you can get discouraged,” Rower says. “You don’t want to read that other people are having recurrences or getting sick. Sometimes, it’s just too much exposure.”

Both Rower and Thiboldeaux say that if you’re really struggling, it may be time to talk to a mental health professional, such as a counselor or psychologist. Your care team or social worker should be able to refer you to someone who specializes in cancer patients. Eyer says you should call your insurer to make sure you find an in-network provider.

Support Group Options

If you’re interested in a lung cancer support group or community, here are some places to start:

To connect with people who have specific lung cancer gene changes:

 

WebMD Feature

Sources

SOURCES:

Tom McGuigan, LUNGevity member, Longview, WA.

Michelle Rower, LUNGevity member, Overland Park, KS.

Lou Torres. LUNGevity moderator, Waxhaw, NC.

Kim Thiboldeaux, CEO, Cancer Support Community, Washington, D.C.

Tom Galli, LUNGevity message board moderator, Rockwall, TX.

Annette Eyer, assistant vice president of patient engagement, American Lung Association, Mechanicsburg, PA.

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