Author: Nancy Christie
By the time Beverly Knudson arrived at Cancer Treatment Centers of America® (CTCA) in Goodyear, Arizona, in June 2011, she was physically and emotionally drained. Although she had discovered a lump on the right side of her neck in the summer of 2009, it took more than six months, four negative biopsies and an inconclusive fine needle aspiration before she received the diagnosis of non-Hodgkin lymphoma.
“The doctors had kept insisting that it was nothing or just fatty tumors,” Beverly recalls. “But my daughter Tangi insisted that I pursue it.” Fortunately, Beverly listened to her daughter. And when the treatment protocol they recommended—six rounds of Rituxan® (rituximab)—was stopped after only four doses, Tangi intervened once again.
“They had told me I had enough chemo in my body to shrink the tumors,” Beverly says. But six months later, not only had the original tumors grown but there were additional spots in her lungs, with even more surfacing a year after chemotherapy had ceased.
“Now I was 18 months into it, and I had gone from a stage I to a stage IV,” Beverly says. “And my daughter said, ‘Enough. We’re not doing this anymore.’ In June 2011 we decided to go to CTCA® for a second opinion.” It was while she was waiting for her frst treatment at CTCA that Beverly found something that had been missing from her cancer journey until that point: support from another patient who understood what she’d been through and what lay ahead.
“They had scheduled my first chemo, and I’m sitting there while they are hooking me up, and I’m just in a fog,” Beverly says. “My daughter and granddaughter are sitting there, and we’re all kind of just staring at each other. And I remember that Hugh King (a member of the CTCA Patient-to-Patient Network [PTPN] program) walked up, introduced himself and said, ‘Tell me about you.’ And when I told him my story, he said, ‘I know exactly how you feel.’”
With those words, Beverly says, Hugh granted her a lifeline, rooted not only in his training as a PTPN member but in his experience as a non-Hodgkin lymphoma survivor as well. “Hugh made my first chemo process easier,” she says. “He took the lump out of my throat and the knot away from my stomach.”
The benefits of patient-to-patient interaction
The relief that Beverly experienced is by no means unique. Being able to talk with others who have traveled a similar road can be immensely beneficial for many patients and caregivers, says Steve White, LCSW, Mind-Body Therapist at CTCA in Goodyear. “Many patients think, If you don’t have cancer, you don’t know what I’m going through. So when they meet other patients who have cancer and who do know what they’re going through and they have a chance to talk to them, it can be very supportive.”
Marisa S. Benincasa, MBA, Loyalty Manager at CTCA in Goodyear, says that the PTPN, which has been in place since 2009 and trains survivors to offer support and guidance to other patients and caregivers, provides a welcome opportunity for patients to pose questions that only another cancer patient can answer. Patients who have questions about treatment, side effects or any number of other common concerns can gain valuable insight from those who have already experienced many of the same issues. “These programs give a new patient the opportunity to ask those questions of someone who has already been through it,” she says.
In addition to formal programs like the PTPN, patients support each other in less formal environments, says White. “A lot of patients connect with one another in our cafeteria at lunch or at dinnertime. They form a kind of ad hoc group among themselves. Many of them become friends, and when they go back home they often still have their friendships.”
Colon cancer survivor Suzanne Bonner remembers one of those informal connections that was significant during her treatment at CTCA in Tulsa, Oklahoma. “I met a man named Chuck,” she says. “He knew I was a ‘newbie’ and asked me if I had my port yet. When I said I didn’t, he wanted to know if I was a driver or a passenger.” The question seemed odd to her at the time, Suzanne says, but when she realized that port placement made a difference when it came to putting on a seat belt, the question not only made sense but also illustrated the value of the kind of information only other patients can share.
Suzanne says that this one interaction was symbolic of the many ways she experienced patients reaching out to one another to offer support and education. “There wasn’t a lot of Why me? and self-pity. We all had hope and helped each other,” she says. “I remember thinking that they all have made an impact on my life. I have taken something from everyone I met, and I hope that they took something of me as well.”
Giving back is the best medicine
Interestingly, it is not just newly diagnosed cancer patients who benefit from these peer-to-peer interactions. Veteran “fighters” who are now on the other side of treatment also find significant reward in helping those who are new to the experience. “Very often patients who have completed treatment or are far along and doing well get this really strong urge to give back,” Benincasa says. “They want to help other people. So programs like the PTPN not only give patients the opportunity to receive assistance, help and support but also provide the opportunity to give something back. That is very important to patients.”
Colon cancer survivor Phil Bosanko, who underwent treatment at CTCA in Zion, Illinois, was thrilled to give back through the PTPN. “I jumped at the opportunity,” Phil says. “I loved the idea that we could share our experiences with other cancer patients and be able to show newly diagnosed patients that there is hope. Someone may have helped you along the way. Giving back and helping new patients with their questions and concerns is a no-brainer.”
While helping cancer patients can be a wonderful outlet for survivors, Benincasa cautions that it is not for everyone. “We want to be sure that volunteers understand the level of commitment required and that they are in a place in their own treatment and life where giving time to the program will not be detrimental to them,” she says. To that end prospective PTPN members must be willing to dedicate six to 15 hours per week and undergo training at CTCA before they are ready to provide peer support. PTPN volunteers must also be able to respond to requests within 48 hours.
Online and community-based options
Options for patient-to-patient support abound outside the hospital setting as well. Newly diagnosed cancer patients can take part in virtual discussions via the Internet, chat with other patients via national patient-match programs and participate in person with community-based support groups, says White. “Patients can get involved in diagnostic chat rooms centered around certain diseases and share treatment plans with one another. Also, most large cities have cancer community centers or cancer wellness centers, which can be very helpful.”
National online patient-match options include Cancer Hope Network and Imerman Angels, which both connect trained individuals who have recovered from cancer or have cared for someone who has recovered with patients or caregivers currently undergoing a similar experience. Once matched, patients and survivors can speak via phone and benefit from one-on-one connections with someone who truly understands the unique challenges a diagnosis can bring.
For patients and families interested in connecting with other patients and caregivers in person, many community-based cancer support organizations provide support groups that can meet this need. The Cancer Support Community, formed in 2009 when The Wellness Community and Gilda’s Club Worldwide joined forces, is one such organization with support services that include regular group meetings at centers across the country and an array of online services.
Connection is the key
Whether in person, over the phone or via an online community, the opportunity to connect with others who share a similar experience can help patients and caregivers fnd answers and combat the sense of isolation that can accompany a cancer diagnosis.
Recalling the isolation of her more difficult times when the cancer diagnosis was still fresh, Beverly says, “I would go home from chemo and get in the shower, and that was where I would cry because I didn’t want anybody to know how scared I was and how lonely I felt.” Connecting with Hugh and benefiting from his support helped ease her burden. “Hugh helped by saying, ‘I know how you feel,’” she says. Now that she has been in remission for 18 months, Beverly is happy to return the favor and help other patients. “I’m out there at CTCA all the time. I’ll go up to chemo and ask if there is anyone new here or anyone who is alone. And I will go with them. Or sometimes I can see their body is shaking and their voice is quivering and that they are scared, and I’ll sit and talk with them. I try to encourage them to know that there is a light at the end of the tunnel.”