Kathy LaTour is a breast cancer survivor, author of The Breast Cancer Companion and co-founder of CURE magazine. While cancer did not take her life, she has given it willingly to educate, empower and enlighten the newly diagnosed and those who care for them.
The growing importance of rehabilitation after cancer is changing the field of survivorship.
The rehabilitation area at Aurora Sinai Medical Center in Milwaukee looks like a playground for grown-ups. The front of a bus comes out of one wall with the stairs inviting someone to step aboard—only to find that the bus lurches much like the real thing. In the middle of the room, securely bolted to a waist-high wall, sits a two-door Pontiac Grand Prix. Around the edge of the room, a bedroom, porch, living room and kitchen have been re-created.
It’s here that patients have to show physical therapist Leslie J. Waltke that they can complete the daily tasks they performed before cancer. Can they lift a bag of groceries out of the trunk of the car and carry them up the porch stairs and through the door? Is their balance good enough to get on a bus with its erratic movement?
What good is it to cure a patient’s cancer if the process leaves him or her incapable of living life?
Waltke opened Cancer Rehabilitation Specialists in 1998, and as word spread among patients, oncologists also became aware of their patients’ progress. In 2005, Waltke joined Aurora Health Care as Cancer Rehabilitation Coordinator and now oversees 40 licensed physical, occupational and speech therapists throughout the Aurora Health Care system in Wisconsin, where cancer rehabilitation begins as soon as possible during treatment and may last well into survivorship, depending on a patient’s needs.
Despite advances in recognizing the importance of cancer rehabilitation, the vast majority of patients and survivors are still grossly undertreated for deficits common with cancer treatment. This is due, in part, to the lack of training physical therapists receive about the needs of cancer patients, Waltke says.
“We would never walk into the room of a patient who has had surgery to repair a rotator cuff the day after surgery and say, ‘Here are your exercises,’ and walk out,” Waltke says. “We would never hand a paper of exercises to stroke patients. So why are we treating our cancer patients like that?”
The World Health Organization (WHO) has defined rehabilitation as “a process intended to enable people with disabilities to reach and maintain optimal physical, sensory, intellectual, psychological and social function.”
The increasing number of cancer survivors has brought more attention to quality-of-life issues for these patients, who may end treatment with physical and cognitive limitations related to inactivity, surgery, radiation or chemotherapy.
Inactivity related to cancer and its treatment can contribute to systemic problems, including loss of strength and muscle torque as well as negative effects on the respiratory and cardiovascular systems.
And, while exercise is often heralded as the answer to everything from treatment side effects such as depression and fatigue to preventing recurrence, rehabilitation professionals strongly suggest that patients who are newly released from acute treatment first be assessed for any number of problems that could contribute to a less than successful exercise experience that could even be dangerous.
Indeed, rehabilitation is now listed among the services that must be made available by cancer centers accredited by the American College of Surgeons’ Commission on Cancer (CoC), which certifies more than 1,500 cancer programs in the U.S. and Puerto Rico.
In addition, the National Comprehensive Cancer Network’s guidelines say “rehabilitation should begin with a cancer diagnosis and should continue even after cancer treatment ends” to impact fatigue, identified as one of the most common symptoms reported by survivors.
But in cases where rehabilitation has finally been added to the list, there is little, if any, elaboration on when, how or where it should be applied, or by whom in the patient’s care and survivorship trajectory. Its application in ways other than those traditionally connected to rehabilitation also requires overcoming barriers that include rigid attitudes about which circumstances require rehabilitation—a question left to the individual cancer centers to answer and pay for.
Waltke says implementing cancer rehabilitation requires paradigm expansions in a number of areas, the first of which is the notion that rehabilitation is only for breast cancer patients with shoulder and lymphedema issues, when it should be for every cancer patient, and the attitude should be one of not only returning patients to their pre-cancer health, but also of educating them about how to remain healthy.
The first time Sandra Wade did her own laundry after treatment for inflammatory breast cancer, it was a triumph, she says. “Do you know what it’s like when a little kid ties her shoes and can’t wait to show someone? Well, that was me.”
Wade began a marathon of chemotherapy and radiation in 2002 after receiving the diagnosis at age 52. In 2010, the cancer seemed in remission, but by then, Wade was practically an invalid, needing help to get in and out of bed and to complete daily tasks. She was angry that, although she was alive, she was unable to live her life.
After researching her options for ways to build strength, she learned that Jupiter Medical Center, only six miles from her home in North Palm Beach, Fla., offered cancer rehabilitation by therapists trained in the Survivorship Training and Rehab, or STAR, Program created by Julie Silver, MD, a Harvard Medical School physiatrist (rehabilitation physician).
“The therapists gave me strength training and balance training, so I could climb stairs,” says Wade, whose bedroom is located on her home’s second floor. “I am doing everything on my own. I exercise at home now; I am dressing myself, cooking, cleaning and getting in and out of the bathtub.”
Wade recognizes that she is far from what would be considered the norm of cancer survivorship, particularly when doctors greet her with a hug and say, “You’re still alive!” But it doesn’t matter. She is alive, she points out, and wants to be able to live her life, which is what has turned her into an advocate for rehabilitation.
Silver created the program after her own recovery from breast cancer, which, she says, took two years of applying her own knowledge and working with physical and occupational therapists and then a trainer to regain her strength.
At some point patients may need to accept the new normal, but let’s get as close to the old one as possible first.
“The idea of telling people to accept the new normal is saying to accept the pain, fatigue and disability, and they don’t have to,” Silver says. “It is really terrible medical advice and not appropriate medical care. Yes, at some point patients may need to accept the new normal, but let’s get as close to the old one as possible first.”
Patients need physical, occupational and speech therapy services for a variety of cancer-related or cancer treatment-related problems, including pain, fatigue, deconditioning (the sense that you can’t do what you used to) and difficulty with gait, Silver says.
Recent European studies indicate that early rehabilitation after surgery improves functional outcomes in patients with brain tumors as well as providing a general and significant improvement in all aspects affecting quality of life, such as fatigue, depression and physical condition and kinesiophobia (the fear of moving).
Gary Spitzer, MD, a medical oncologist at Bon Secours St. Francis Health System in Greenville, S.C., says he has seen multiple advantages in his patients who are involved in the rehabilitation program at his hospital.
“The most immediate is reduction in emotional instability and stress relief,” he says. “They are stronger and do more, go out more and participate more with family. Their fatigue is better.” Spitzer recommends to his patients that they go during treatment, but not all take him up on it.
Lori McKitrick, a certified speech-language pathologist and director of rehabilitation services at Bon Secours, says the STAR Program design allows them to meet patients where they are, using more than a dozen evidence-based tools to assess hundreds of potential physical, cognitive and psychological problems that are all part of ensuring an optimal quality of life. The results determine each patient’s baseline before working toward the patient’s goals.
“The patient who asks why he can’t do the exercises at the gym doesn’t understand he doesn’t have good balance because of neuropathy in his feet, poor cardiopulmonary endurance and he needs help monitoring his progress,” McKitrick says. “It’s not safe for him to do it independently now, but our goal is to get him back to independence.”
John Kisner, 76, attributes rehabilitation with keeping him going during his treatment for cutaneous T-cell lymphoma. He receives chemotherapy three times a month and photopheresis two days every other week when, in a four-hour procedure, his blood is removed and the white blood cells are treated with ultraviolet light and a chemical compound before being returned to his body.
“I went to my first rehab in a wheelchair,” Kisner says. The physical therapist gradually helped rebuild his strength. Today he can walk two miles without stopping.
His treks around the building and on the exercise equipment have also given Kisner something else: a new lease on life. As a self-employed computer programmer, Kisner had lost most of his clients before he began rehabilitation. And he had given up his driver’s license because he was too weak to drive. Now he has gone back to work, and he is studying for his driver’s test. “The disease is incurable, but with treatment and rehabilitation, I can expect to have some more years added to my life.”
Silver explains that impairment is what a patient has on a physical exam and disability is, by definition, what a patient can’t do because of the impairment.
“When you can’t change the impairment, say with neuropathy, you can impact the disability.”
The STAR Program includes training not only by physical rehabilitation professionals, such as physiatrists and physical therapists, but also those who focus on engagement in meaningful activities of daily life, such as occupational and speech therapists. In addition, nurse navigators, social workers, dietitians and others are trained to create a multidisciplinary team approach with appropriate referrals for issues such as cognitive dysfunction and psychosocial concerns such as depression.
Silver gives an example of a head and neck cancer patient who was depressed because he couldn’t return to work due to his inability to drive. “He couldn’t turn his head enough to see,” Silver says, “a problem that was addressed in rehabilitation. Once he could turn his head, he could drive, and then he could return to work, which eliminated his depression. We see all the issues as connected.”
At present, the inclusion of rehabilitation in cancer treatment varies from cancer center to cancer center, with increasing numbers recognizing a need to incorporate rehabilitation into survivorship to improve quality-of-life issues for the nearly 12 million cancer survivors in the U.S. These are survivors who don’t want to accept the new normal until they have done everything they can to recapture the old one, Silver says, or at the very least, function at a higher level, such as Sandra Wade, who recognizes she will never run a marathon, but is happy doing her own laundry.
“What good is it to cure a patient’s cancer if the process leaves him or her incapable of living life?” Waltke asks.
As a cancer rehabilitation educator, Waltke gives physical therapists throughout the U.S. the more formal definition of oncology physical therapy as treating “the plethora of musculoskeletal, cardiopulmonary and functional deficits associated with cancer, surgery, reconstruction, chemotherapy, radiation, and hormonal and biological therapies.”