By BETSY TAYLOR
MAYWOOD, Ill. — In the months after Kari Harris completed her surgery and chemotherapy for breast cancer, she realized the trauma of the disease and treatment had changed the way she experienced her own home. She'd pass the foot of the stairs and think of the day her mother crumpled there, overcome with sadness during her daughter's treatment. Entering one of her children's bedrooms, Harris might eye the spot where she too once sat on the floor and cried, overwhelmed with her illness.
Although she is cancer free more than three years after her diagnosis — "They can't find anything wrong with me right now," she said — Harris continues to come to terms with what it means to move forward with life after cancer.
Harris holds hands with her daughter on Katie's first day of elementary school. Harris says her bout with cancer makes her appreciate family milestones.
"Every first day of school I cry," said the stylish 36-year-old mother of two who lives in Oak Park, Ill. "Some of that is typical mom: my babies are growing up. And some of it is because I get to see it."
For Harris, like many cancer patients, the disease and treatment altered her health, her self-perception, her relationships and her perspective on life. "Once your hair comes back, and you don't go to treatment, people think everything is fine now, and that's not how the person with cancer feels," she said. She found a link to the post-cancer medical services and support she needs, including therapy with a clinical psychologist to help her recover from a post-traumatic stress disorder related to her cancer diagnosis, at the Cancer Survivorship Program at the Cardinal Bernardin Cancer Center. The center in the Chicago suburb of Maywood, Ill., is part of the Loyola University Health System, a member of CHE Trinity Health.
It offers medical, psychological and wellness services to patients transitioning out of their active cancer treatment to improve their quality of life and to address ongoing concerns, like long-term side effects and the possibility of second cancers caused by treatment.
Because many primary care physicians don't know all the details of a patient's cancer treatment and because most oncologists don't focus on a patient's general overall care, the program creates a plan to coordinate the patient's future care. The center also assists patients through other challenges, like relationship changes or worries about the cancer's return.
Cancer survivorship programs have multiplied across the United States in recent years as the numbers of cancer survivors have grown from about 3 million in the early 1970s before the nation's War on Cancer to about 12 million cancer survivors in the U.S. today.
Dr. Patricia Robinson, a medical oncologist who directs the Cancer Survivorship Program at the Cardinal Bernardin center, credits better medical care including more effective and targeted therapies with the increased survival. According to the American Cancer Society, more than two of three cancer patients these days are alive at least five years from their diagnosis.
And as more people have been surviving cancer, there has been a growing understanding that more needs to be done to care for this population. Survivorship programs meet ongoing needs of cancer survivors, usually defined in these programs as patients who have finished their active cancer treatment, such as surgery, radiation and/or chemotherapy. Survivorship care may include assessment of the medical and psychosocial effects following cancer treatment and intervention recommendations for the long-term effects of cancer and its treatments.
Moving forward
Robinson and other clinicians working with the cancer survivorship program complete a written care plan for each patient. It includes the potential for future complications from cancer therapies, such as cardiovascular problems associated with certain chemotherapy drugs. It makes recommendations for future screenings and other follow-up care. They mail a copy to the patient, and provide another to the patient's primary care doctor.
Harris, who received her cancer treatment at Loyola, has returned to the Cancer Survivorship Program on the medical campus on several occasions. In addition to the counseling for post-traumatic stress, she received help from social workers to secure and retain health insurance, a challenge given the cancer diagnosis on her health history. She recently returned to get fitted with a replacement compression sleeve to prevent lymphedema, the fluid retention and tissue swelling that people are more prone to when they've had lymph nodes removed.
Emotional roller coaster
After fitting Harris for the sleeve, Lisa VanderWall, the nurse coordinator for the survivorship program, explained an emotional trajectory that she said is common with cancer patients. At the time of a cancer diagnosis, the patient's world is upended — tests, procedures and treatments define their days. But once the patient is done with the task-specific demands of active treatment, the patient may feel at loose ends and traumatized by the physical and emotional ordeal.
"At that point, I feel they need more support than they do at the time of diagnosis. Life after cancer is very, very different." VanderWall said patients may not feel as good and may not feel they look as good as they did before their illness. Their relationships with loved ones may be different. While some patients at the center tell staff about strengthened bonds, others struggle to keep personal connections during a time of such anxiety in their lives. She said many patients remain deeply fatigued or worried about recurrences. It can be hard to return to life as it used to be. "Now," she said, "you have to do the laundry."
Focusing the mind
VanderWall said some survivors tell her their experiences with cancer added clarity to their lives, helping them focus on what they view as really important. Others commit again to trying to protect their health. She recalled one 20-year-old patient who felt deconditioned and unattractive following his cancer treatment. He began working with a fitness trainer on the medical center's campus. The structured exercise program made the young man look and feel better, VanderWall said.
Loyola clinical psychologist Patricia Mumby tailors her work to the physical and psychosocial needs of the individual she treats through the Cancer Survivorship Program. Some patients are doing great on their own, and she encourages them to continue with the coping strategies that work for them. She counsels survivors through relationship difficulties, teaches relaxation techniques to patients to supplement their pain management care from a physician, and may suggest guided imagery exercises for someone trying to stop worrying about relapse.
Loyola medical center chaplain Sr. Francetta Glowinski, OSF, has taught cancer survivors saddled with ongoing anxiety techniques to help them manage their worries. She advises patients: "Acknowledge it, face it, and then as much as you can — let it go."
Harris said that for her, the adjustment from cancer patient — where "You just do what you can to get through the day" — to cancer survivor is an ongoing process. "It didn't really hit me, what I went through, until I was done," she said.