Cattails

Living beyond cancer

Program provides resources for many paths of journey

Woman facing the morning sun with outstretched arms

Once you’ve had cancer, life is rarely the same. Regardless of the type of cancer or success of treatment, this disease touches lives like few other illnesses. It may even enrich them.

A new program at Marshfield Clinic helps empower patients to be survivors rather than victims of cancer. “We really want our program to reflect people living with and beyond cancer,” said Mindy Gribble, R.N., cancer survivorship coordinator at the Clinic’s Marshfield Center. “Some see this as the most important experience in their life.”

She and survivorship coordinators at several Marshfield Clinic locations meet with patients when they are first diagnosed and again four to six weeks after cancer treatment is completed. “It gives them a chance to pause and reflect so we can provide the help and support they need,” Gribble said.

“Patients are given a tremendous amount of information when they are diagnosed with cancer. They are asked to make decisions quickly and constantly,” said Jill Depke, oncology nurse practitioner at Marshfield Clinic in Weston and Stevens Point. Patients may have therapy requiring weekly visits to the Clinic. When treatment is completed, patients often wonder “where do I go from here?” she said.

Research and a pilot of the survivorship program with patients who have been treated for breast cancer show six weeks after therapy is a good time to reconnect, said Kadie Van Cleve, R.N., survivorship coordinator, who helped launch the program through Marshfield Clinic at James Beck Cancer Center, Rhinelander. “They’re on auto pilot during treatment, then they have time to process and adjust.”

Survivorship coordinators share a care plan summarizing the diagnosis and treatment and outlining follow-up care for each individual patient. They provide various resources to help patients continue on a journey of healing such as a Facing Forward series, a wellness summary outlining steps to stay well and support groups.

It is part of WINGS (We Inspire, Nurture and Give Support), a holistic approach to cancer care that recognizes physical, psychological, emotional, social, spiritual and economic aspects of life can be affected. The goal of WINGS is to maximize medical care and quality of life from the time of diagnosis through the balance of life.

Among common concerns for cancer survivors are:

Fear of recurrence
Fatigue, problems with sleep
Fear of the future
Relationship issues with spouse, children, colleagues and friends

“The fear of recurrence is huge, especially after treatment has stopped,” said Nan Bethmann, R.N., survivorship coordinator at Marshfield Clinic Cancer Care – Eau Claire. New aches or lumps, follow-up scans and anniversary dates can trigger this fear. “A lot of people have issues with ‘who am I now? I’ve had cancer,’” she said. “Nothing is the same as it was before.”

“We can’t take the uncertainty of recurrence away, but we can give people tools and information so it doesn’t seem so scary,” Depke said.

She encourages cancer survivors to talk about whatever concerns they may have. “I give them permission to feel the way they feel. It’s OK to not be the person you were before. Something as profound as a cancer diagnosis does change people,” she said. They may talk about menopausal symptoms, body changes, feelings, fears – or nothing.

The WINGS program helps survivors address a myriad of issues that may affect the body and mind, from physical pain, fatigue, swelling, weight changes, bowel or bladder control to intimacy. Patients deal with short- and long-term complications of treatment, ranging from loss of appetite to numbness, depression, organ damage or body image issues. It helps to know that these feelings are normal, coordinators say.

Survivors fear they may lose their jobs or their insurance. They may feel confined to a job, fearing they won’t be eligible for insurance elsewhere, Gribble said. Some face challenges with financial issues, legal rights, insurance coverage or communicating with family, friends and co-workers.

Talking to children or grandchildren, as well as having the energy to care for them and participate in their activities, can be real concerns for cancer patients. A support program for children whose loved ones have cancer has provided emotional support to those ages 5 to 12 who struggle to understand or express their feelings, said Bethmann. She and Marcy Elwood, C.S.W., launched CLIMB (Children’s Lives include Moments of Bravery) in January at Marshfield Clinic Cancer Care - Eau Claire to help children learn about cancer and provide reassurance that they are not alone.

Among older patients, transportation can be a concern, Van Cleve said. She works with patients to fit breast prostheses and wigs, some of which are donated by local organizations, at Marshfield Clinic locations in Minocqua and Rhinelander. “We’re here to do more than just treatment. Patients have so many issues with a cancer diagnosis,” she said.

Cancer touches one in two men and one in three women, Gribble said. While no one plans for cancer, the wisdom of those who have survived it can provide support and hope for those at various stages of the journey, she said. “Cancer diagnosis isn’t just a chapter, it’s a novel, and everyone writes their own book. We want to make sure they have a clear table of contents.”

For more information about survivorship and resources available, visit www.marshfieldclinic.org/wings or call the Marshfield Clinic center near you.

WINGS TAKING FLIGHT

The number of cancer survivors in the United States has more than tripled to an estimated 12 million in the past 30 years because of advances in detection and treatment, according to the National Cancer Institute. With more survivors comes the need for increased post-treatment medical care and resources to improve their quality of life.

The WINGS (We Inspire, Nurture and Give Support) program at Marshfield Clinic is guided by an advisory council of cancer survivors and co-survivors, whose loved ones were diagnosed with cancer. "There's an understanding cancer survivors have among themselves, a wisdom that we want to honor," said Mindy Gribble, R.N., cancer survivorship coordinator at the Clinic's Marshfield Center.