Peer-to-peer connections bring unique benefits for patients coping with lung cancer.
Four years ago, Ronda Beaty was in the best shape of her life, so when she found herself winded just from walking up the stairs, she knew something was wrong. “My boyfriend and I were hiking in an Ohio state park one day, and I couldn’t even keep up with him,” says Beaty, who lives in Tipp City, Ohio. “And I was used to being the one in front.”
After two pneumonia diagnoses, Beaty was ordered to get a CT scan — and that’s when her life changed. On Dec. 23, 2016, she was told she had adenocarcinoma non- small cell lung cancer (NSCLC). “It was stage 4 with metastases to my brain, adrenal glands and lymph nodes,” she says.
Beaty began treatment in January 2017, and although she credits her medical team for saving her life, she struggled with anxiety and feeling helpless throughout her treatment.
“I have a huge group of friends and family and loved ones that are a support network, but none of them are lung cancer patients,” Beaty says. “I just felt like I really needed to talk to somebody that understood — (who) didn’t think they understood but really understood.”
But Beaty couldn’t find anyone like that. Time passed, and in December 2019 — almost three years to the date of her diagnosis — she felt ready to give up. Then she came across the website for GO2 Foundation for Lung Cancer, the world’s leading organization dedicated to extending and improving the lives of individuals who have or are at risk of lung cancer.
“I emailed them, and the very next morning, I had an email in my inbox — a personal introduction about who they were, what they were about and how they could help me,” she says.
Beaty was quickly connected with a woman through the organization’s Phone Buddy Program, which offers peer- to-peer support and matches patients with volunteers who have either been through or are going through lung cancer treatment. Beaty was surprised to learn that her mentor, Sandy Spears, was not only a stage 4 lung cancer survivor but also had no evidence of disease (NED). “I didn’t even know it was possible to be a stage 4 lung cancer patient with NED,” Beaty says.
The two exchanged texts for weeks, and then Spears asked if Beaty wanted to talk on the phone. “We spoke for about an hour-and-a-half on that first call,” Beaty says. “When I met Sandy, I had been battling for three years, and I was pretty ready to throw in the towel. But meeting her changed my whole attitude. I cried for three solid days because just meeting someone like that had given me newfound hope.”
A UNIQUE BENEFIT
Patients with lung cancer can get emotional, educational and social support through individual and group therapy sessions, online groups, and help hotlines, but options may be limited. “Even though lung cancer causes more deaths than breast, prostate and colorectal cancers combined,
the number of support groups formed for lung cancer survivors is surprisingly very small,” according to a study published in Clinical Lung Cancer.
“There is still stigma out there, multiple types of stigma, that keeps people from getting support,” says Katie Brown, vice president of support and survivorship programs at LUNGevity, a national lung cancer-focused nonprofit organization. “That might be a deterrent for someone reaching out (for help), so maybe a peer mentor might appeal to them instead.”
Peer-to-peer support offers a unique benefit that other forms of support cannot: the ability to pair a patient with a mentor who has or has had lung cancer and is uniquely qualified to help them cope.
“The benefit is that you are specifically connecting with a peer mentor to talk about your disease,” Brown says. “A mentor is able to walk with you through it, encourage you and offer you hope, because they’ve been through it and came out on the other side.”
In addition to providing emotional support and sharing coping techniques, peer mentors can help shed light on treatment options, discuss how to deal with difficult conversations with doctors or family members, and help patients begin to visualize their life post-treatment.
LUNGevity’s LifeLine Support Partners program matches patients to mentors from a database of over 400 volunteers. Pairing is based on gender, age and diagnosis whenever possible. GO2’s Phone Buddy Program matches by stage, treatment plan, symptoms, side effects and profile, ensuring that patients and mentors are as compatible as possible.
“I was a little leery going into all of this,” Beaty says, “but it’s not intimidating at all. Sandy and I are the same age. She was diagnosed approximately at the same time I was. She had the same metastases that I have. We just had so much in common right away.”
Another benefit of customization: “It’s as personal as I want it to be,” Beaty says. “If I don’t feel up to it to respond, there’s no judgment there. You decide the level of commitment.” Although some patients prefer to converse only through text or email, others get close with their mentors, even meeting face-to-face.
Finally, mentors can open doors in ways that patients might never have imagined. In addition to helping Beaty find hope in her diagnosis, Spears introduced her to support programs, such as Lung Cancer Living Room, a GO2 Foundation support group that Beaty attends virtually through YouTube Live each month. Beaty’s involvement with GO2 Foundation and LUNGevity also led to a grant to attend LUNGevity’s annual International Lung Cancer Survivorship Conference, the world’s largest meeting of patients with lung cancer and caregivers, where she will be surrounded by even more patients, doctors and scientists.
“All of these people that I’ve met ... have instilled in me a new drive — a new reason, a new purpose to live,” Beaty says.
NOT LOOKING BACK
To become a mentor for GO2 Foundation and LUNGevity, volunteers simply need to have or have had lung cancer and be willing to speak with others about their experience. LUNGevity provides hopeful volunteers with online training videos, a manual and conference call training to ensure they are ready for the responsibility ahead.
Mentors choose to volunteer for a variety of reasons. Some want to pay it forward after receiving support of their own; others, like Spears, volunteer for the opposite reason — because they didn’t have support themselves.
“I decided to be a mentor in the Phone Buddy Program because when I was diagnosed with cancer, I didn’t have anybody to reach out to,” says Spears, who lives in Monroe, Georgia. “I felt totally alone.”
Lisa Zarov of Highland Park, Illinois, joined LUNGevity’s LifeLine Support Partners after surviving stage 1a adenocarcinoma NSCLC. A licensed clinical and school social worker, she felt uniquely qualified to help but also wished to stay connected to the cancer community.
“I just wanted to be able to do something, anything,” Zarov says. “I suppose it would have been easy enough to just have surgery, go on with my life and not look back, but I felt like in my position, as lucky as I was to have it caught early, there was no way I could just turn around and not look back.”
Nichelle Stigger, one of the patients Zarov came to support, received a diagnosis of stage 2b primary mucinous adenocarcinoma, one of the rarest types of lung cancer, at age 34. Stigger credits her relationship with Zarov as a major factor in her ability to work through her anger and shock at her diagnosis.
“It was really, really special,” says Stigger, who lives in Oak Park, Illinois. “I always tell Lisa, ‘I love you ... and know that I am better because you were able to love me through this process.’”
Anyone considering mentorship should consider a few factors, starting with their role in the relationship. “You are there to support the other person, not the other way around,” Zarov says. “Sometimes there’s a fine line between sharing your story and kind of crossing that line of leaning on the person you’re trying to support.”
In addition, there is also the possibility of a mentored patient dying — an unfortunate reality that Spears, whose first match died in November 2019, understands well. “The passing is always hard, because you do become close to them,” Spears says. “The way I look at that is that I want to be what I wanted somebody else to be for me. I want to give the support that I wanted in return — and at least I was there for her during that time to help her.”
Despite mentoring’s possible hardships, both Zarov and Spears agree that the benefits make the experience worthwhile. “Every time you share your story, even if it’s with one person, you’re being an advocate. You’re raising awareness,” Zarov says. “And to me, that’s so important. But also, I made a friend.”
Spears adds, “You build relationships with people who are like you. I’ve helped Ronda, but she’s helped me, too. She teaches me things, too. I can give her guidance, give her comfort ... but by giving somebody else comfort, you’re comforting yourself. You’re helping yourself.”
Although Beaty wishes she had found support sooner, she feels that everything happens when it’s supposed to. “It came at a time for me when I really needed it,” she says.
Beaty and Stigger have found a sense of comfort through peer-to-peer support. “It’s so powerful,” Stigger says. “I believe that’s part of the reason I was able to get through this process of cancer so successfully is because my mind was OK.”
“There is nothing more isolating than cancer,” Beaty says. “But there is also nothing better than a fellow lung cancer survivor saying, ‘I get it’ and knowing that they mean it, that they really do understand.”