Get the support you need!
Finding the right support group can help you feel your best—inside and out!—during treatment.
For Brenda Brewer-Pettigrue, in treatment for Stage IV non-small cell lung cancer (NSCLC) for nearly two years, giving support is one of the best things about connecting with others with the disease. “Being there for someone when they need it makes me feel better,” says Brenda, who posts on four separate Facebook pages for people with NSCLC. “Whatever I’m sharing, someone at some point had to give that to me.”
It took a little while for Brenda, a high-school track coach living in San Jose, CA, to realize that talking to people outside of her family and friends (two of whom were in treatment for breast cancer) might be a good thing. But then she reached out and found people who understood the treatments for NSCLC…the side effects…the anxiety. “You get real personal,” says Brenda. “But talking to someone in the same situation as you, you’re not as fearful. You don’t feel as alone.”
“When it comes to finding support, the most important thing to remember is that there’s no one-size-fits-all approach,” says Tara Perloff, Senior Manager of Support Services at Lung Cancer Alliance. “You need to find that support that’s right for you at this moment. If you’re newly diagnosed, you may want information about NSCLC.” And if you’re Stage IV and on your third treatment, you may only want to talk to others with Stage IV disease who have experience with your treatment.
Here, what to know if you have NSCLC and you want…
• Face-to-support. In-person support groups are usually led by someone trained to keep the discussion positive and productive. You make eye contact, have a conversation with people who are there in the room with you, and maybe make a new friend who lives in your area. That said, most hospital-run cancer support groups are for people with any type of cancer. Despite lung cancer being the number one cancer killer, “there are fewer than 100 lung cancer-specific support groups in the U.S.,” says Perloff. Look for a hospital where lung cancer is treated, she suggests. “You’ll be more apt to find people with lung cancer in the support group.”
• Online help when you need it. Unlike in-person groups that meet at specific times, online support communities, including discussion boards on lung cancer association sites, offer support when you want it. 11 pm and you can’t sleep? Someone out there will answer your post. Want to bond with people in your shoes? Go to the website of the therapy you’re using and enroll in their support group—some medications offer nurse support, tips and other resources. Message boards and forums also enable you to connect with people using your therapy. And groups run by a lung cancer association are monitored, so whether you have a question about a treatment, a side effect, insurance or short-term disability, a moderator can steer you toward resources. Another bonus: Anonymity can make it easier to unload your fears or admit you don’t know something or need a pep talk. Warning: Posts can occasionally be negative or depressing. “Some people may not have a problem with this, but others may become discouraged,” comments Perloff. “Keep in mind, everyone’s cancer is different. Just because someone is similar to you and isn’t doing well, that has no bearing on how you’ll do.” Solution: Click away from the post or try another page or support site.
• A more personal experience…but not in-person. A telephone or email support program can connect you with a fellow survivor who has been trained to mentor, encourage and support you. Volunteers are matched as closely as possible to your requests, so consider someone with whom you’d feel most comfortable. Someone male or female? Around your age? A parent with young children? In treatment three years or in remission for two? Someone on your treatment? “Sometimes doctors don’t know how to manage some of the side effects—particularly with the targeted therapies, since only a small percentage of NSCLC patients are eligible to take these,” says Perloff. “The doctor may have seen only one or two other people using the therapy. So to connect with someone else is invaluable. I saw my dermatologist. I use this cream for my rash. It can be life-changing to the individual who’s suffering.”
Also consider a mobile app, such as Lung Cancer Alliance’s LCA Unite, which provides 24/7 support via live chat with survivors and caregivers. (Find it at your app store.)
• Medical advice. Your best bet? Talk to your doctor. “If you want a second opinion, we can refer you to a treatment center in your area [where you can get one],” says Perloff. “Also, talk to a nurse navigator who might know of a doctor who better suits your expectations.”
Of course, not every person with cancer wants support, she adds. “And that’s okay. Some people prefer to focus on themselves and their treatment.” While they may prefer to handle things solo at this moment, she adds, they may want to reach out at some point down the road.
Bottom line, make sure the support you get is actually support, advises Brenda, who began an immunotherapy not long ago. “I’ve been asked, What’s your prognosis? Why would you ask that question? I believe that God can change anything. I’m going to live, and I’m not going to think
any other way!”