By Lori Lovely
It’s the dreaded diagnosis that strikes fear in even the strongest: cancer. Terror is often followed by overwhelming confusion as the patient struggles to come to terms with not only the illness, but also with a myriad of treatment options. Not knowing where to turn, the patient and the patient’s extended family can become lost in the medical melee that follows.
Studies indicate that support positively impacts a patient’s results and can even increase chances of survival by reducing the three most significant stressors associated with cancer: unwanted aloneness, loss of control, and loss of hope. Research shows that social and emotional support is as important as medical care for patients facing a cancer diagnosis. Yet, even with a team of oncologists, radiation oncologists, surgeons, and other doctors supervising medical treatment, a patient can feel isolated, bewildered, and depressed.
Information, help, and support are available in the greater Peoria area through the Cancer Survivorship Program and the Cancer Support Community (CSC), an integral part of Cancer Services at OSF Saint Francis Medical Center. Their team of specialized oncologists and medical staff, dedicated advanced practice nurse, psychosocial therapist, and registered dietitian incorporate a mind-body-spirit approach to provide care and support to patients and their families, from diagnosis through end of life.
CSC is an international non-profit created through collaboration between The Wellness Community and Gilda’s Club Worldwide in 2009. CSC optimizes patient care by providing essential services to people affected by cancer, such as support groups, counseling, education, and healthy lifestyle programs that aren’t always included in typical care plans offered by hospitals and doctors.
A recognized collaborator with the Commission on Cancer and a recommended partner for Survivorship/Psychosocial Support Programs, CSC provides all services free of charge, including education and support programs for patients, caregivers, and family members affected by cancer.
“We are only the third in the nation to get this hospital affiliation,” says Dr. Mackenzie McGee, medical director of the program. “It’s groundbreaking.”
After visiting an affiliate in Indianapolis, IN, associates from OSF Saint Francis Medical Center determined this survivorship program could serve the people of central Illinois. “We had to meet certain standards and provide the right services,” McGee explains. Those include having a medical director, dietitian, and psychosocial worker on staff.
Network of Support
“Our team works together to meet the patient’s needs,” says Kathi Copelen, MDC Cancer Clinics coordinator. The team does so in a colorful, casual setting rather than a clinical one. “There are rugs and inspiring pictures on the wall,” she elaborates. “It’s bright, with lots of light. It looks more like a living room than a physician’s office.”
Anyone affected by cancer is welcome. “It’s not just for patients,” Copelen says.
Caregivers are better able to provide support when they’re getting a little of it themselves. They typically have different needs, emotions, fears, and stresses. “Caregivers hold things in,” speculates Sabra Burress, counselor. “They’re busy doing things for the patient, being strong for the family. They need a place where they can let it out.”
People who receive support (whether in support groups, in-person, or online) experience less depression, more zest for life, and a better attitude about their illness. By providing emotional, social, and psychosocial support, CSC provides a place where everyone affected by this disease feels valued and cared about. “We do a lot of cheerleading and motivating,” Copelen notes.
Leading is as important as cheering. CSC is a recognized leader in psychosocial oncology care, offering evidence-based programs to treat every aspect of the client’s well-being.
Because each client has different needs, CSC’s programs and services include a personalized assessment to determine their unique needs and wishes. CSC’s new distress screening tool is part of the patient-centered care provided. Routine screening for distress and early interventions has demonstrated improved patient outcomes. An individualized care plan is created, which could include support groups (in-person and online), health and wellness programs, and educational programs.
There are many types of support groups, Burress points out. Groups may be professionally facilitated or run by cancer survivors. “It’s good to be with others who have been through the same things; there’s a deeper level of relating.” Telling their story is part of the healing process, she believes—part of the necessary combination of family, medical, and fellow patients essential for full support.
Some groups are disease-specific for different types of cancer, age, or gender. There are also specific support groups for a limited duration, such as those for newly diagnosed patients. Groups can focus on a variety of topics, including coping skills, education, healthy lifestyle, grief, and loss.
However, support groups aren’t for everyone. A care plan may include individual counseling, during which a client spends one-on-one time with a mental health professional trained to help them express their feelings, fears, and emotions.
One program helps teach patients what to ask their doctor by providing a list of questions and links to resources for more information. Other forms of support will include art and music therapy and community events. Events may be to celebrate, to educate the community, or for fund raising. After-hours options such as chat boards ensure that no client has to wait for office hours to get the support that they need.
Diet and Exercise
CSC groups encourage people to work on diet and exercise. Incorporating healthy changes, such as walking daily, can be easier in the company of others. “We actively work on health for a better outcome,” McGee says.
Exercise may require coaching. Knowing what to eat requires information. A paper-to-plastic program is offered to teach clients what to look for when buying food at the supermarket. “We go shopping with people and discuss choices, look at ingredients, talk about health choices,” explains Allyson Cole, registered dietitian.
Similarly, cooking demonstrations are part of a healthy lifestyle program. Recommending foods without hormones or additives and encouraging clients to avoid processed foods, Cole endorses organic fruits and vegetables, along with lean protein sources. “It’s similar to preventative diet plans,” she says, “and is good for anyone.” Nonetheless, she will tailor a nutrition plan to suit the individual.
It’s important to customize a nutrition plan because, she explains, some foods can interact with certain medications and treatments. “There’s no blanket treatment for all diagnoses. Some herbs can affect the absorption of medications. Some holistic routes simply don’t work during treatment, but can be discussed and incorporated after treatment, if it is valuable to the patient.”
For the best results and most immediate effect, McGee says, “The key is to get involved at the time of diagnosis and make changes that will help you feel better.”
Patients typically experience changes during treatment that may require an adjustment to their diet. For example, some patients may develop difficulty in swallowing. To help keep weight stable during treatment, dietary adjustments can accommodate such issues. “Patients are happy to have someone give them ideas of what they can do,” McGee observes.
The first concern for cancer patients is survival. The second is feeling better. Advances in technology and cancer treatment have led to an increase in survival. However, the need to provide quality follow-up care to address late and long-term effects of cancer and its treatment is often unmet.
A cancer survivor is any person who has been diagnosed with cancer, from the moment of diagnosis through the rest of their life. The three distinct phases associated with cancer survival include the time from diagnosis to the end of initial treatment, the transition from treatment to extended survival, and long-term survival.
According to the American Cancer Society, there are approximately 14.5 million Americans with a history of cancer; this number is expected to grow to 18 million by 2022. Nearly 70% of cancer patients now live five or more years beyond diagnosis. With cancer survivorship increasing, quality follow-up care has become a priority in the healthcare industry.
Cancer patients, caregivers, and survivors must have the information and support they need when making decisions that affect treatment and quality of life. What many don’t realize is that cancer survivors have to cope with the long-term effects of treatment, as well as psychological concerns, such as fear of recurrence. “The difficult time is after treatment because you don’t see a doctor as often,” McGee speculates. “It’s a difficult psychological transition.”
Ongoing support is important to reduce stress levels and ensure continued quality of life, Burress believes. By promoting holistic healing, CSC’s programs allow staff to help clients take control of their lives again. “Survivors want something they can control because, as patients, they give up a lot of control during treatment,” she says.
With the goal of achieving growth and recognition, Copelen says CSC welcomes everyone affected by cancer. No referral is needed. Even an appointment is not required. “You can get information by calling or just walking in.” The important thing is to get the support you need.
For more information, contact Cancer Support Community at 309-308-0200, or stop by the Illinois Medical Center Building, 1001 Main Street, Peoria, Suite 201.