THE INFORMED PATIENT: THE NEXT FRONT IN CANCER CARE

The Wall Street Journal

By Laura Landro, Dec. 9, 2013 7:34 p.m. ET

 

As More Patients Survive, Cancer Centers Handle Disease's Knock-On Effects

 

For cancer patients, getting through the rigors of treatment is the first hurdle. Then, life as a cancer survivor poses its own daunting physical and emotional challenges.

 

A growing number of hospitals and community cancer centers, which treat the majority of the nation's cancer patients, are launching survivorship-care programs. These include treatment follow-up plans, physical rehabilitation and emotional assistance, such as counseling and support groups. They resemble programs currently offered by big urban cancer centers like MD Anderson in Houston and Memorial Sloan-Kettering in New York.

 

As more cancer patients are treated successfully, treatment centers are focusing on the next phase and discovering it can pose daunting challenges that require new approaches to care. Laura Landro explains on Lunch Break. Photo: Greenville Health System.

Chemotherapy and radiation can damage vital organs such as the heart and liver, possibly causing secondary diseases years later. The body can be debilitated, cognitive functions impaired and emotions distressed, making return to normal life and work difficult. Some 70% of cancer survivors experience depression at some point. Patients have higher levels of anxiety years after the disease is cured. And there is always the chance that cancer will return.

More patients are expected to face such health issues as the number of cancer survivors grows, partly due to improved early detection and treatment.

The Commission on Cancer, a consortium of professional organizations that accredits U.S. cancer centers treating 70% of newly diagnosed patients, will begin in 2015 requiring that they provide survivorship-care plans for their patients.

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"I tell patients now we are going to follow you for your entire lifetime," says W. Larry Gluck, an oncologist and medical director of the Greenville Health System's Cancer Institute, in Greenville, S.C., which set up a Center for Integrative Oncology and Survivorship in 2011. "The mental and physical needs of cancer patients go on long after therapy has been completed." In the past, patients typically were sent back to their family doctor, who might have little knowledge of delayed side effects or complications of treatment and recurrence risks, Dr. Gluck says.

There are close to 14 million cancer survivors living in the U.S., a number that is expected to grow to 18 million by 2022, according to the National Cancer Institute. About 40% have been alive 10 years or more after diagnosis (including this reporter, a leukemia survivor).

Private health insurers and Medicare typically cover cancer patients' medical visits, during which some survivorship-care planning can take place. Cancer centers say some private insurers consider survivorship planning a necessary service. A bill currently in congressional committee, the Planning Actively for Cancer Treatment Act would require Medicare to cover care-planning services at diagnosis and once cancer patients finish treatment.

 

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Nonprofit groups like Cancer Support Community, which was formed in 2009 through the merger of two of the largest support organizations, Gilda's Club and the Wellness Community, offer free services including personalized assessment and care plans, distress screening, support groups and complementary therapies such as yoga and meditation. Last year, it announced a partnership with Greenville to incorporate its services into the hospital system as part of the recent survivorship center.

"Cancer hospitals are realizing that they have to be a one-stop shop, taking care not just of the body, but of the mind and soul of the survivor," says Kim Thiboldeaux, chief executive officer of Cancer Support Community.

After being treated at the Greenville, S.C., Cancer Institute last year, Renee Gossman says yoga classes at the institute's survivorship center helped her regain strength. Greg Beckner

Renee Gossman, 71, a personal trainer who teaches water aerobics, was diagnosed at the Greenville Cancer Institute with uterine cancer in January 2012. She had a hysterectomy, chemotherapy and radiation. Ms. Gossman, who doesn't have a lot of family living nearby, says she was fatigued and felt isolated during nearly a year of treatment. "You get through all of that, and then it's like, what's going to happen now?" she says.

 

Ms. Gossman says her oncologist, Larry Puls, referred her late last year to Greenville's survivorship center where she met with a social worker, a nurse navigator and a dietitian. She received a summary of her treatment, copies of her pathology reports, a follow-up plan and a summary of other programs and activities she might find helpful.

 

"They give you a team of people who are going to look after you, get you back involved in the world and see to your physical, social and emotional needs," Ms. Gossman says. She started a 12-week exercise program at the center that focuses on restoring aerobic conditioning, muscular strength and flexibility. She also began taking yoga classes and a writing workshop through the Cancer Support Community program at Greenville. Ms. Gossman currently volunteers once a week as a greeter in the lobby of the cancer institute.

Other services offered at Greenville include free nutrition counseling and help with the after-effects of specific cancers, such as swelling, called lymphedema, that often occurs after breast-cancer surgery.

Patients, and their caregivers, are encouraged to use the survivorship center as a resource, says Regina Franco, a nurse practitioner and manager of the survivorship center. "If you hear on the news that you should be taking vitamin E, call us and ask, 'Is this really something I should be doing?' "

Greenville recently joined with researchers at the University of South Carolina to open a human-performance lab that will assess patients before and after treatment, billed as an office visit.

One area of research: how cancer and chemotherapy affect energy production at the cellular level and how exercise might restore some of the damage. Also being studied is the impact of complementary therapies such as yoga, massage and acupuncture, Dr. Gluck says.

 

Many smaller cancer centers and oncology practices are using a software program called Journey Forward, created by a group of advocacy organizations and health companies, to create customized follow-up plans. The program, which includes resources for both doctors and patients, has been downloaded about 30,000 times since it was launched in 2009, says Shelley Fuld Nasso, chief executive of the nonprofit National Coalition for Cancer Survivorship, which helped develop the software. For cancer survivors, "things can come up many years down the road that you aren't expecting or prepared for," she says.

 

Write to Laura Landro at laura.landro@wsj.com

 

To view article, go to http://online.wsj.com/news/articles/SB10001424052702303330204579248400281496142

PRESCRIBING A NEW KIND OF CANCER REHAB FOR CANCER SURVIVORS

At the Cancer Support Community-Benjamin Center, we have over 20 mind-body classes per week to help people with cancer and their families regain strength, focus, balance and energy, as well as workshops relating to nutrition and complementary care.  Since 1982, CSC (formerly The Wellness Community) has stressed the importance of taking care of the whole person and the whole family through a program of psychosocial support, including exercise, stress relief classes and education. 


By LAURA LANDRO
A version of this article appeared January 29, 2013, on page D1 in the U.S. edition of The Wall Street Journal, with the headline: Prescribing a New Kind of Rehab for Cancer Survivors.

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A new push for cancer "rehab" is helping patients avoid long-term physical disability and complications after treatment ends. WSJ's Laura Landro and Julie Silver, Harvard Medical School assistant professor, discuss on Lunch Break. Photo: Getty Images.

 

Patients who undergo cardiac-bypass or joint-replacement surgery routinely are given specific guidance to the exercises and therapies they will need to return to their everyday activities and to prevent complications or relapse.

For cancer patients, the story is very different.

After undergoing often harsh and debilitating treatments, there is often little help for their return to normal life.

Now, an increasing number of hospitals are offering programs to provide cancer patients with comprehensive rehabilitation services, amid mounting evidence that these can help speed recovery, shorten hospital stays and improve quality of life.

Rehabilitation services are "an absolutely essential part of cancer care," says Dan McKellar, chairman of the Commission on Cancer. Last year the nonprofit standards-setting group, overseen by the American College of Surgeons, began requiring cancer programs to offer rehabilitation services to be eligible for accreditation. Major cancer centers are taking steps to better coordinate rehabilitation after treatment. And Medicare and most insurance companies are covering such services.

Doctors who specialize in rehabilitation medicine can evaluate patients for fatigue, pain, anemia and decreased endurance that result from chemotherapy, radiation and surgery. They can then prescribe physical and occupational therapy, as well as treatment for sleep problems, depression and cognitive impairment. Dietitians help with nutrition, as cancer can change the way the body uses food and patients often lose their appetite from treatment. Some institutions offer massage and yoga.
More than a third of the nation's 12.6 million cancer survivors had physical or mental health problems that put their overall health in jeopardy and had a negative impact on their quality of life, according to a recent study of federal health data funded by the National Cancer Institute. While patients may get emotional help from friends, family and support groups, physical problems may get scant attention once they are no longer in the care of oncologists and surgeons.

"When cancer patients are diagnosed, everyone sits down to look at the case, decide what to do and convey that plan to the patient, but the same sort of process doesn't happen for survivors of the treatment," says Kathryn Weaver, lead author of the study and an assistant professor at Wake Forest Baptist Medical Center in Winston-Salem, N.C. Patients, she adds, may feel their physical problems are "the new normal" and may not ask their doctors for help. And even though most hospitals have rehabilitation services, there may not be a formal program to identify cancer-patient needs or coordinate a care plan among different therapists.

One model being adopted by hospitals, including Johns Hopkins in Baltimore, M.D. and Bon Secours St. Francis Health System in Greenville, S.C., is called STAR, for Survivorship Training and Rehab. It uses specially trained teams of caregivers, coordinated by navigators such as nurses, to help patients with physical and emotional issues, as well as any other concerns that arise.

In 2011, Dan Yarborough, a 67-year-old attorney, had two stem cell transplants within months of each other and high-dose chemotherapy to treat multiple myeloma, a form of blood cancer, at Bon Secours. The treatments left him weak and fatigued, with pain and numbness in his feet that threw off his balance and left him unable to walk steadily and unable to stop himself from falling if he tripped. Golf and travel, favorite pastimes, were out of the question, and he was worried about being able to argue his cases standing in court.

While hospitalized for his second transplant, a nurse navigator from the hospital's STAR program set him up with regular physical therapy appointments and nutrition counseling. Staffers helped him establish goals such as improving his ability to get in and out of his SUV, and worked with his doctors to change medications that were linked to his foot problems.

The program was "incredibly valuable," Mr. Yarborough says, giving him back the stamina to return to work. He is following up with a recommended exercise program at a medical fitness facility owned by the hospital where his exercise plan is overseen by a STAR-certified physiologist for a $30-per-month fee.

The Bon Secours STAR team also deals with specific issues such as helping head and neck cancer patients restore normal functions of swallowing, speech and movement after treatment. "In a lot of hospitals you will see these patients fall through the cracks after surgery, so their cancer is gone but they can't turn their neck to drive a car," says Lori McKitrick, a speech therapist who oversees the program. "We are doing a great job saving people's lives but we have to help them live their lives too."

Julie Silver, an assistant professor at Harvard Medical School and expert in rehabilitation medicine, developed STAR after her own treatment for breast cancer, which she says left her too sick to care for her family or return to work. Her oncologist suggested she rest and try to heal on her own, but "it left me thinking there has to be a better way," Dr. Silver says. "Every cancer survivor should have the opportunity to heal as well as possible and function at optimal level whether their cancer is cured, in remission or they live with cancer as a chronic disease," Dr. Silver says.

She started a company, Oncology Rehab Partners, which helps health systems and hospitals create their own STAR programs for many types of cancer. STAR certification is used by insurance companies in reimbursement decisions. The program costs a typical hospital about $25,000 to launch with an annual fee of $10,000 for continuing education and recertification, Dr. Silver says.

Michelle Houle, 45, has been participating in the STAR program at Bon Secours since she was diagnosed with breast cancer in 2010. After chemotherapy, a bilateral mastectomy and radiation, Ms. Houle, on long-term disability from her job as a food company shelf manager, says she felt "about 90 years old." Nurse navigators at the hospital set her up with a specialist to help prevent lymphedema, a painful swelling of the lymph nodes and a common side effect of breast surgery, and she began a physical therapy regimen.

Ms. Houle suffered a recurrence in 2011 and is now on another chemotherapy regimen, but keeps up her exercises at the hospital's medical fitness facility. She is slowly returning to activities like gardening and housework. The rehabilitation program provides "a base to keep you going," she says, "and there is always someone to talk to if I'm feeling side effects."

Signature Healthcare in Brockton, Mass, which includes Brockton Hospital and 150 employed doctors, treats local cancer patients and those who have had treatment at major centers in Boston, then return home for follow-up with difficult physical aftereffects. Last week, it launched its own STAR program after 23 staffers went through six months of training and received STAR certification. "These needs have been unmet for such a long period of time, and they are very excited to be able to offer this enhanced level of service" says Linda McAlear, the program's coordinator.