Serving Survivors

5/18/2017, Mary Anne Dunkin, Georgia Trend

In her two-plus decades in nursing – first as a nurse manager in an oncology unit and later as a patient educator – Wanda Lowe, RN, spent most of her career helping people with cancer. But it wasn’t until Lowe was diagnosed with cancer herself in 2001 that she realized just how difficult the journey must have been for her patients.

“In doing patient education, I learned about resources and worked with support groups,” says Lowe. As a patient, she wondered how someone who was not as well plugged in could get through it. “I didn’t even have the energy to get from here to home,” she says.

Today, as one of Georgia’s estimated 410,740 cancer survivors, Lowe serves as cancer care navigator for the WellStar West Georgia Medical Center in LaGrange, providing patients the support and information they need to navigate through the medical system and beyond. She has also been instrumental in the development of one of Georgia’s most robust programs for cancer survivors, a group that is constantly growing due to early detection and advances in medical treatment.

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Life Redefined

The word survivor once implied someone had reached a certain milestone – remission or five years cancer-free, for example. The National Coalition for Cancer Survivorship, the oldest survivor-led cancer advocacy group in the nation, however, defines someone as a cancer survivor from the time of diagnosis and for the balance of life. For most cancers, that balance is getting longer and the milestones that once defined survivorship are more attainable.

A 2015 study published in JAMA Oncology found that for men and women ages 50 to 64 who were diagnosed with a number of cancer types between 2005 and 2009, the risk of dying from cancer within five years of diagnosis was 39 percent to 68 percent lower than for people of the same age diagnosed in 1990 to 1994.

While the sole goal of cancer treatment was once to keep people alive, cancer centers like WellStar’s Enoch Callaway Cancer Center are increasingly focusing on the needs of the whole person as they fight cancer and eventually transition into life after treatment.

Some say it’s the time after treatment that people need and seek help the most as they deal with a wide range of emotions, which may include exhilaration over having a second chance tempered by fear of cancer’s return or uncertainty over how to proceed with life as a survivor.

“When you’re dealing with it, you’ve got to get into that fight mode, to do what you’ve got to do to survive just to get through life,” says Lowe.

For many cancer survivors, the realization of what they have been through hits weeks, months or even years after treatment has ended, says Christy Andrews, executive director of the Cancer Support Community Atlanta, a nonprofit organization that provides supportive services to cancer survivors and their families in a home-like environment.

“They look over both shoulders and say, ‘Oh my gosh what happened to me! I was so busy just making it through my appointments. Now I get the magnitude of what I have been through,’” she says.

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Comprehensive Support Systems

Not so many years ago, there was little to offer people who were reaching the realization of what they had been through or facing the emotional, practical and health concerns of life after cancer treatment.

“It wasn’t until 2005, when the Institute of Medicine published From Cancer Patient to Cancer Survivor: Lost in Transition, that we realized there was no system of care in place for patients completing treatment and re-entering the world as a survivor,” says Mary Ann Heddon, RN, MSN, OCN, clinical trials coordinator at the Pearlman Cancer Center at South Georgia Medical Center in Valdosta.

Two years later, with a grant from the National Cancer Institute, the Pearlman Center sent two nurses for survivorship education at the City of Hope, a not-for-profit hospital and clinical research center in California. When they returned home, they laid out a blueprint for a comprehensive survivorship program tailored to the resources of a community cancer center. Over the next four years, the program gradually became a reality.

The program materials were assembled in kit format containing educational materials for patients, staff, administrators, physicians and other providers, resources for developing a program, templates for survivorship documents and an evaluation program that measures its impact on patients. The kit was available free of charge to cancer centers in the region and was purchased by more than 25 cancer centers across the country.

It has also been included in the American College of Surgeons Commission on Cancer (CoC) Resource Repository, a collection of tools and examples developed by CoC-accredited cancer programs. As of 2015, the provision of survivorship services is now a requirement of cancer centers seeking American College of Surgeons Commission accreditation.

Pearlman implemented the program locally with a core team of a nurse practitioner, social worker and dietitian who meet with patients four to six weeks after completing treatment. Topics addressed include potential long-term and late effects of treatment; psychosocial issues such as anxiety, depression, insurance, finances and work-related problems; and dietary habits to lower the risk of cancer recurrence and other chronic diseases.

“Survivorship is about healing,” says Heddon, one of the developers of the survivorship kit. “Pearlman Cancer Center’s goal in offering survivorship services to its patients is to help each patient heal, reduce the risk of going through another cancer experience and know how to get the help they need to be a healthy, long-term survivor.”

The Northside Hospital Cancer Institute, another leader in providing survivorship services, offers monthly survivorship classes to patients completing their cancer treatment. The two-hour classes, led by a registered nurse, social worker and registered dietitian, help survivors discover what’s next for them, provide assistance and offer tips on wellness.

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Helping Survivors Thrive

Some of the most helpful programs for survivors, however, begin not when they have just completed treatment, but while they are going through treatment or perhaps years after it has ended. In these programs, people who are newly diagnosed can receive support and inspiration from longer-term survivors, and those who have completed treatment have a place to process their feelings, develop lifelong healthy habits, receive support or find a purpose in their own experience by helping others.

Here are some ways Georgia medical centers are helping cancer survivors thrive.

Support groups. Virtually every cancer center or health system offers its own support groups or refers patients to groups offered by organizations statewide, including the American Cancer Society, Cancer Support Community of Atlanta, Georgia Prostate Cancer Coalition, as well as many churches. Support groups allow people to cope with the emotional aspects of cancer by providing a safe place to share their feelings and challenges and drawing on the experiences of others.

Support groups can come in many forms. Some are led by a trained facilitator or mental health professional, while others are much less formal. Some groups meet just to talk and share among themselves, while others plan get-togethers or projects to serve others. Some are open to people with any form of cancer, while others focus on certain forms. The Curtis and Elizabeth Anderson Cancer Institute at Memorial University Medical Center in Savannah, for example, has active support groups for prostate, breast and head and neck cancer.

“Support groups are the heart of what we do,” says Andrews. But even when groups are not in session, visitors to the organization’s homelike facility near Northside Hospital can almost always find support from others who have come to the center to take classes, check out reading materials in the library or find a comfortable place to pass time between doctor’s visits.

People who are unable to attend support groups in person can find sources of support, including web-based support groups, through the American Cancer Society, cancersupportcommunity.org, cancer.net and cancercare.org among others.

Hair and makeup help. Cancer or its treatment can cause cosmetic changes including skin rashes, hair loss, nail discoloration, limb swelling and scarring. Many of these problems resolve once treatment has ended, but others can be long-lasting or permanent.

Helping survivors manage or conceal cancer- or treatment-related changes can be important to self-esteem and recovery, even after medical treatment has ended. The American Cancer Society’s Look Good Feel Better program, conducted by ACS-certified cosmetology volunteers, is a two-hour hands-on workshop covering nail and skin care; options relating to hair loss, including wigs, turbans and scarves; and suggestions on using clothing to camouflage areas of concern. The workshops are offered at locations throughout the state. For those who are unable to go to a group workshop, a free, one-time individual salon consultation with a volunteer cosmetologist might be available in their area. Free, at-home materials are available for men and women by calling 800.395.LOOK (5665). At home-materials for men are also available at lookgoodfeelbetterformen.org.

Art therapy. Research shows that creative art therapies reduce anxiety, depression, pain and fatigue and increase quality of life in patients with cancer.

Art therapy is offered by several cancer centers in Georgia and can come in many different forms.

At the Curtis and Elizabeth Anderson Cancer Institute at Memorial University Medical Center, a project called Weaving Hope allows cancer patients and their caregivers to take part in weaving unique and colorful wall hangings on a loom on loan from the Fiber Guild of the Savannahs.

“We have volunteers from the fiber guild who come typically on Wednesday mornings and weave with patients and caregivers and create these amazing, beautiful fabrics, and in them they weave these pieces of paper on which patients have written what their hopes are,” says Suzy Buelvas, M.Ed, manager of oncology support services at the institute. The first completed wall hanging is on display now; a second one is in progress, she says.

At WellStar West Georgia’s Enoch Callaway Cancer Center, the art therapy program has been a favorite among cancer survivors since it first started in 2010, says Lowe. The program, which is open to anyone in the community who is going through or has gone through cancer treatment, began with two or three classes offered a month. It quickly expanded to every week and now twice a week. Thanks to volunteer instructors from the community, donations of supplies and grants from the Centers for Disease Control and Prevention and several statewide organizations, the program is free of charge and introduces participants to a variety of artistic media through which they can explore and express themselves.

Highlights of the program include two projects that were displayed in local museums and galleries. In the first, Body Works: The Journey, survivors took home paper mâché torsos and decorated them to tell the story of their own bodies throughout treatment. The artists were then videotaped to explain how their artwork illustrated their physical journeys. The videos were played along with the exhibit of 56 torsos at the LaGrange Art Museum. Once the exhibit was over, partici- pants could take their artwork home. Some were displayed at the center. Lowe still has hers on display in her office.

In the second, Connection: The Journey, each survivor was given a 12 x 12-inch canvas and asked to describe what their support network meant to them throughout their treatment. When the finished products were returned, they were sorted into themes – such as religion, family and friends. Similarly themed pieces were mounted together as quilts and displayed at the Cochran Gallery in downtown LaGrange.

Exercise and nutrition therapy. Fitness and nutrition take on a new importance for cancer survivors. Whether treatment has affected their ability to enjoy favorite foods or they are trying to develop better eating patterns as part of a healthier lifestyle, survivors can find classes to meet their needs.

At the Enoch Callaway Cancer Center, a monthly program called Live, Laugh, Learn provides a healthy, free lunch and is led by registered dietitians who educate cancer patients and survivors through cooking demonstrations; one-on-one consultations that include an assessment of the individual’s nutritional needs; and assistance with gardening. One month, participants planted a raised-bed herb garden. Those who are interested are welcome to help maintain the garden and enjoy fresh herbs from it, says Lowe.

Studies show that regular exercise can improve cancer symptoms and even lower the risk of cancer recurrence in survivors. Many cancer centers incorporate exercise classes – either onsite or offsite – in their treatment. In 2012, Emory’s Winship Cancer Center and the YMCA joined to offer Winship at the Y, a free support program at 18 Atlanta-area YMCAs where wellness coaches work with patients to address individuals’ needs concerning nutrition and physical activity. The program is open to everyone, regardless of where they received treatment.

Camps and retreats. Sometimes the best approach to surviving cancer is taking a little time to get away from it all. In the north Georgia mountains, Second Wind Retreat offers a place where people dealing with cancer can relax in a beautiful natural environment to gain new strength, energy and momentum. Located two hours north of Atlanta on a road that ends in the Chattahoochee National Forest, this rent-free retreat is offered exclusively to people who are going through cancer treatment and recovery. It is available through medical referrals.

Northside Hospital offers Camp Hope, a three-day weekend retreat for adults who have been diagnosed with cancer. Funded solely by the Northside Hospital-Atlanta Auxiliary, the camp is held at Camp Twin Lakes in Rutledge and features educational, recreational and inspirational activities in a relaxing environment where campers can bond. Most who attend the camp have either finished or almost finished treatment, says Stacey Bannister, MBA, CMPE, manager of oncology support services and communications, Northside Hospital Cancer Institute.

Celebrations. Surviving cancer is cause for celebration. Many medical centers offer special events and days for survivors to celebrate life beyond treatment and for those still undergoing treatment to take a short reprieve for fun with their families. Northside Hospital, for example, hosts an annual Braves Day. Survivors are treated to a free game ticket, T-shirt and refreshments at the game and are invited to participate in an on-field parade before the game.

The Curtis and Elizabeth Anderson Cancer Institute hosts its Harvest of Hope each fall at Savannah’s Grayson Stadium, where current and past patients and their families are treated to games, children’s and family activities, carnival foods, T-shirts to commemorate the day and a huge cake celebrating survivorship.

“It’s a day they and their family don’t have to think about the cancer part of their lives,” says Buelvas. “It’s a nice fellowship for the family and an opportunity for patients to see team members outside of the medical environment, treating them to a day of fun, fellowship and activities.”

Many survivors look forward to the celebration, which is now in its 16th year, and some return many years after their treatment has ended.

“We have survivors stand up after the five years so we can see people thriving,” says Buelvas. “[Current patients] see that once they get beyond it, they still have a lot of meaningful experiences waiting for them.”

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