The Rise of Survivorship
After cancer, people often need special services. Meet two clinicians who champion survivors—one for breast cancer, the other for endometrial.
In 1971, just 3 million Americans, a scant 1.5 percent of the population, were still alive following a cancer diagnosis. Today, with better detection and treatment, survivors number 18 million, or 5.4 percent of the population, according to the American Cancer Society. That means more people than ever need help dealing with the long-term medical, physical, and emotional effects of cancer treatment. Survivorship clinics are multiplying. At Carilion, a host of related services—fitness classes, mental health referrals, support groups, speaker series, rehab programs—are gradually coming together to form a comprehensive survivorship program. It’s a process driven by passionate cancer fighters. People like Modupe O. (Seyi) White, D.N.P, and Shannon Armbruster, M.D., M.P.H., each of whom champions cancer survivors in her own way. Their stories follow.
A Friend for the Journey
A woman newly diagnosed with breast cancer typically has many questions, medical as well as existential. “The first question always is, ‘Am I going to die?’” says Seyi White, D.N.P., “followed by ‘I don’t know what to think or what to do.’” It’s normal to feel overwhelmed and lost if you’ve never experienced cancer before, White tells her patients. “But you have me at your side, and I’ve worked with many women with cancer that is just like yours.”
White is one of two doctorally prepared nurse practitioners who run Carilion’s Breast Cancer Survivorship Clinic. Every day, patients treated for breast cancer at Carilion come to White for the moral support, strength, and knowledge they need to prepare themselves for what lies ahead. “Wherever my patients are on their journey with breast cancer, from that devastating moment when they get their diagnosis throughout the course of their life, I will meet them there,” White says.
For cancer survivors, information is power, and White gives her patients plenty of it. Women who are diagnosed at younger ages want to know how treatment will affect their fertility and when it’s safe for them to get pregnant after treatment, so White refers them to a specialist in reproductive endocrinology. She talks to her patients about how treatment might affect their sexual health, and the importance of staying fit. “The more active people are, the more comfortable they are in their own bodies and the better they feel,” she says. “Exercise also decreases the risk of breast cancer recurrence.”
White can connect newly diagnosed patients with survivors who have already completed treatment to get first-hand information about breast reconstruction, the challenges of treatment, and what their lives will look like in years to come. Anxiety and depression is a frequent topic—along with medication, mindfulness, and deep-breathing exercises that can help. When patients ask whether their cancer will come back, White never tells them they have nothing to worry about—even if the cancer was caught early. “Because recurrence is always a possibility with breast cancer,” she says. Instead she shows patients how their risk decreases when they adhere to their treatment plan. They have a choice, she tells them: either be crippled by the fear of a recurrence, or lower the risk and continue with their lives. “There are always things you can do—exercise, choosing a healthier diet, and reducing the anxiety that increases the risk of a cancer coming back,” says White.
Close monitoring is key to survivorship. Post-treatment, White will see survivors every six months for five years, and then once a year after that. Often, she treats a host of maladies in one visit.
Recently, a patient complained of heaviness in one arm, as well as depression and menopausal symptoms related to endocrine therapy. “I referred the patient to occupational therapy for treatment of lymphedema, started her on an antidepressant to help manage menopausal symptoms, encouraged her to increase physical activity, and directed her to the Survivorship web page for access to exercise videos and psychosocial resources,” White says.
Sometimes she has to dispel misinformation— like when a survivor wanted to stop endocrine therapy because she read on the internet that it increases the risk of developing endometrial cancer (it wasn’t true for the medication she was taking). When patients miss follow-up appointments— some of them live more than four hours away from Carilion—White keeps in touch with them until they can make it in. She takes meticulous notes and listens to her patients’ concerns, always encouraging them to achieve their short- and long-term goals and aspirations.
One newly widowed survivor recently confessed to White she was afraid to drive alone for six hours to see her son and grandchildren, a visit she had looked forward to for weeks. White helped the patient come up with a plan: her daughter- in-law would fly in and the two would drive together. She even called her patient to help solve last-minute logistical challenges. “That was the most important goal that day for my patient,” White says. “So we tackled it together and made it happen.”
Better Living After Endometrial Cancer
When Shannon Armbruster, M.D., M.P.H., began her residency in obstetrics and gynecology, she was alarmed at the state of her patients’ health. “We were curing women of cancer, yet as survivors, they often struggled emotionally and physically with poor quality of life and poor health,” says Dr. Armbruster, now a board-certified gynecologic oncologist at Carilion Clinic and assistant professor at the Virginia Tech Carilion School of Medicine.
For the last 13 years, Dr. Armbruster has made it her mission to improve the quality of life for survivors of endometrial cancer, the most common gynecologic cancer. In 2019, she joined Carilion Clinic for the opportunity to build a survivorship research program for gynecologic cancers. And in May of 2022, she received a competitive career development award from the integrated Translational Research Institute of Virginia (iTHRIV) Scholar Program; it will provide training and mentoring to help translate her research into clinical care. “Ultimately,” she says, “I hope to apply what I’m learning about enhancing the lives of survivors of endometrial cancer to patients with other types of cancer at Carilion and across the country.”
One of her prime targets is obesity. People who are obese have a higher risk of developing 13 different cancers. For women, endometrial cancer tops the list. Upwards of 70 percent of women with that diagnosis are obese, and about half of U.S. endometrial cancer cases are attributed to obesity. “Fat cells make estrogen, which stimulates the lining of the uterus,” explains Dr. Armbruster. “An excess amount of estrogen causes the cells to keep replicating, which can lead to a hyperplasia, or pre-cancer, and ultimately cancer.” Although rates of other cancers have fallen over the years, the incidence of endometrial cancer has risen in lock step with the rise in obesity in the United States.
Just as it increases the risk of developing endometrial cancer, obesity can also send survivors to an early grave. “Five years after diagnosis and treatment for endometrial cancer,” says Dr. Armbruster, “women are more likely to die from cardiovascular disease related to their obesity than they are from their cancer.”
The Group Effect
Inspiring people to move is challenging— only 20 percent of the general population gets the recommended amount of exercise, and even fewer endometrial cancer survivors do. Dr. Armbruster—together with her co-investigator, Samantha Harden, Ph.D., a registered yoga teacher who is associate professor and exercise extension specialist in the Department of Human Nutrition, Foods, and Exercise at Virginia Tech—is trying out a possible solution.
The pair have devised an eight-week lifestyle intervention they hope will show endometrial cancer survivors the benefits of incorporating physical activity, along with a few fruits and veggies, into their lives. In previous research, Dr. Armbruster demonstrated that survivors of endometrial cancer who exercised had better quality of sleep and sexual health, and lowered their body mass index.
The new intervention is a specially tailored version of FitEx, a group-based online physical activity and nutritional program that is offered by health educators of USDA’s Cooperative Extension System in at least 14 states. After conducting surveys and focus groups with Carilion patients, Dr. Armbruster felt confident that FitEx, customized with content relevant to endometrial cancer survivors, would be an excellent intervention to pilot-test. “We found that our survivors did not want a weight-loss intervention,” she says, “but they did want to focus on their health. And they wanted to connect with other survivors, but not in a face-to-face group.”
Dr. Armbruster and Dr. Harden recently wrapped up a proof-of-concept study on their FitEx version, which they call FitEx-ECS (for “endometrial cancer survivor”). They enrolled six survivors and fourteen family members and friends, who were the survivors’ supporters and participated in FitEx activities with them.
Teams racked up a credit of one mile for each 15 minutes of their chosen activity. Participants also tried to eat five servings of fruits and vegetables per day. The intervention included a weekly 30-minute virtual group session for participants to talk about a topic related to cancer and do yoga or exercise together.
“We know from behavioral science studies that people who do things in a group are more successful at that activity,” says Dr. Armbruster. “This is a personalized intervention that allows survivors to choose their support group and what exercises they will do, and it avoids the negative connotation of exercising solely to lose weight.”
By Anita Slomski
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