The cancer experience, the vigilance over health and wellness last a lifetime.
I have vivid memories of moments from both the cancer diagnoses and the treatments that followed.
A phone call from Daddy came to my place at Ole Miss to say Mama needed surgery suddenly, don’t worry, no need to come home. But soon I was sitting in a Tupelo, Miss., hospital room with him and my sisters as the surgeon called from the operating room to say, yes, it was breast cancer, please confirm how to proceed.
My 36-year-old sister’s more threatening breast cancer diagnosis came a dozen years later. During chemo, she kept working and even ran circles around me at CMA Music Festival during a visit to Nashville that June.
What came next?
Years rolled on. My mom rolled with it all, concerning herself with the kids, my dad, the house and work. My sister Karen changed.
“It made me a better person,” she says today. “It changed my perspective about what is important.”
A different life
A uniting factor is that the almost 15 million survivors living in the U.S. are changed in some way. It’s an experience that doesn’t end after therapy is complete.
The REACH program, while helping survivors understand and adjust to their “new normal,” sees survivors at all stages of life and healing. The program accepts survivors after treatment is complete, no matter what age, length of time since the diagnosis or what kind of cancer. As a result, people in the program include the newly treated and those whose cancer experience occurred decades ago.
Many survivors face new sets of physical, emotional and functional challenges related to cancer. For example, some cancer survivors have increased risk for recurrent or secondary cancers or cardiac issues related to treatment. “The struggle isn’t over when they finish treatment,” Wright said.
Vanderbilt Pediatric Oncology/Hematology Director Debra Friedman, M.D., who directs REACH, says the program enhances the ongoing care of the oncologist and the primary cancer provider but doesn’t replace it.
“Unfortunately cancer and its therapy are not kind and gentle, and can have long-term implications for patients’ health and well being,” said Friedman, an internationally recognized expert in cancer survivorship. “The focus of the survivorship program is to optimize health and well being after definitive cancer treatment has completed. It’s focused therefore not on the cancer, but on the person who happened to have cancer.”
REACH services begin with a review of each patient’s diagnosis and treatment records, gathered from wherever the person was treated. The summary can be critical, Wright said, given that the time period can be such a blur for patients.
A physical exam is included in the initial visit and an individualized survivorship cancer plan is created for each patient to help survivors take an organized approach to maintaining physical and emotional health, preventing future cancers and other illnesses, staying on track with necessary screenings, and locating educational and support services.
“The most common comment we get is, ‘I’m so relieved that all these things I’ve been worried about, you’ve normalized for me. You’ve helped me understand that I’m not the person I was before my cancer diagnosis. You’ve helped me understand what I need to worry about but most importantly, not to worry about,’” Friedman said. “It helps them focus.”
The survivor’s oncologist, primary care physician and other appropriate health-care providers receive copies of the care plan. Survivors sometimes also share copies with clergy and family members to convey what they have been through and what their ongoing concerns might be.
“Cancer should be considered like a chronic illness, not an acute illness,” Friedman said. “People see cancer as, you have cancer, you get treated and you’re over with it. But the experience and monitoring is going to be lifelong. What most people don’t realize — including people who have cancer, until they’re on the other side — is this is truly a life-altering experience. It’s not something you were just treated with and it’s over with and you just go on.”
Different for everyone
Some people call themselves survivors and others don’t. Some talk about it and others don’t like to. As Wright said, the cancer journey is different for everyone.
My sister Karen George, now 49, thinks back to things that used to concern her – a spotless house, time spent worrying about what other people think, keeping everybody else happy. She’s still incredibly thoughtful. But she will also seek experiences, traveling and taking leaps any chance she gets.
On Wednesday, my mom, Phyllis Zettler – diagnosed in November of 1990 — got her annual mammogram in Tupelo. She’s 74 now, still more concerned about the kids, my late father – who died of cancer — the house and work.
The night before, my sister Karen took a zipline on Freemont Street in Las Vegas. Mom says, “It’s like she wants to live every minute.”
To Learn More
The REACH for Survivorship Program is located at the Village at Vanderbilt. Connect at 615-343-7400, firstname.lastname@example.org, or go to www.VanderbiltReach.org.
Debra Friedman, M.D., is the E. Bronson Ingram Chair in Pediatric Oncology, associate professor of pediatrics at Vanderbilt University Medical Center, co-leader of the Vanderbilt-Ingram Cancer Center’s Cancer Health Outcomes and Control Research Program and director of the Division of Pediatric Hematology-Oncology at Monroe Carell Jr. Children’s Hospital at Vanderbilt.