Today, more people are surviving longer after cancer treatment, and more of their needs are being addressed by research and included in the continuum of care.
BY BOB HECKER
When Joe Flynn, DO, MPH, considers cancer survivorship statistics since the National Cancer Act was signed in December 1971, he thinks of his mother.
“Mom had chronic lymphocytic leukemia (CLL) in 1989-90, and in 1991 we started seeing the impact of the ‘war on cancer,’” says Flynn, co-director of the Division of Hematology at The Ohio State University. “1991 was the first year that cancer deaths in the U.S. started leveling off.”
Flynn’s mother was on a clinical trial involving essentially the only drug available then for CLL. “But it was too little too late.”
Although CLL remains incurable, medical scientists have since learned much more about this and other cancers. Many CLL-specific clinical trials are under way at institutions around the world, including Ohio State’s Comprehensive Cancer Center – James Cancer Hospital and Solove Research Institute (OSUCCC – James), where Flynn is medical director of survivorship clinics.
The trials involve chemotherapies, immunotherapies, targeted therapies that disrupt molecules involved in tumor growth, and bone marrow transplants. “Today we have multiple agents targeted to specific cancers based on their molecular signatures,” Flynn says. “Not a day goes by when I don’t wonder, ‘If she got that disease now, how would she fare?’”
The answer may lie within statistics that reflect the growing legions of cancer survivors in the United States.
In its AACR Cancer Progress Report 2011, the American Association for Cancer Research says 68 percent of adult cancer patients today are living five or more years after initial diagnosis, up from 50 percent in 1975. The five-year survival rate for all childhood cancers combined is up from 52 percent in 1975 to 80 percent.
The AACR report also states that, between 1990 and 2007, death rates in the United States for all cancers combined dropped 22 percent for men and 14 percent for women, resulting in an estimated 898,000 fewer deaths from cancer.
And of nearly 12 million cancer survivors currently in this country, the AACR says the majority were diagnosed more than five years ago, and approximately 15 percent were diagnosed 20 years ago or more.
“In signing the (National Cancer Act) and announcing the war on cancer, President Richard Nixon stated, ‘As this year comes to an end, cancer remains one of mankind’s deadliest and elusive enemies,’” said Electra Paskett, PhD, MSPH, associate director for population sciences at the OSUCCC – James, during her presidential address at the 35th annual meeting of the American Society of Preventive Oncology (ASPO) in 2011. Paskett was ASPO president from 2009-11.
“Overall, we have seen many successes in the war on cancer,” added Paskett, who also leads the Cancer Control Program at the OSUCCC – James. “Many malignancies are now curable. We have better treatments for many cancers, including chemotherapy, surgery, radiation therapy, etc., and we have addressed symptoms and quality of life for cancer patients. Five-year cancer rates document our progress.”
Julia Rowland, PhD, director of the National Cancer Institute’s Office of Cancer Survivorship (OCS), says the number of survivors will continue to rise.
“Since 1971, there has been an almost four-fold increase in the number of survivors,” Rowland and colleagues wrote in “Cancer Survivors: A Booming Population,” which appeared in the journal Cancer Epidemiology, Biomarkers & Prevention, in October 2011. “This is a testament to the many advances in cancer detection, treatment and supportive care in the intervening decades.”
With age being the most important risk factor for cancer, Rowland and colleagues concluded that population aging and improved survival will converge to generate a growing number of older-adult cancer survivors with needs complicated by co-existing health conditions.
Even the definition of a survivor has changed. Until late in the 20th century, a “cancer survivor” was someone who had been disease-free for five years. Now, Rowland says, individuals are considered survivors from diagnosis through the rest of their lives.
Susan Brown, RN, PhD, chief nursing officer at the OSUCCC – James and supervisor of all survivorship activities there, lends historical perspective.
“Forty years ago, clinicians focused entirely on treating the cancer, and the rest of these patients’ lives took a back seat,” Brown says. “Now that so many patients are living longer, cancer influences every facet of their existence—emotional, psychological, social, financial—and they forever face fears of recurrence.”
Brown says caregivers recognize “that we can’t just treat them and then leave them alone to cope with the concerns of life, like getting back to work, dealing with chronic pain and fatigue, raising children, adjusting financially and re-establishing relationships. Survivors need help facing the sequelae of cancer.”
Addressing survivors’ needs has opened cancer survivorship as a new academic field, says Charles Shapiro, MD, director of Breast Medical Oncology and member of the Cancer Control program at the OSUCCC – James, where he also leads the breast cancer research program.
“In 1970, there were only two or three academic papers on survivorship, compared with thousands today,” he says.
“Survivorship care has become extremely important to promote optimal health for this growing population and to accommodate their expectations for a better quality of life.”
Forty years ago, patients lacked such expectations, and many were reluctant even to talk about their illness.
“People were much more secretive about their diagnosis and condition,” says Patricia Ganz, MD, a professor in the UCLA schools of Medicine and Public Health who has devoted more than 25 years to studying quality-of-life outcomes in cancer and other diseases. “There was little or no accommodation in the workplace, there was little understanding of the disease itself, and there was no psychosocial support available.”
Cancer has since gone public. “In the ‘40s, ‘50s and ‘60s, patients and families often were embarrassed about a cancer diagnosis,” says Barbara Andersen, PhD, a professor of Psychology at Ohio State and member of the Cancer Control Program at the OSUCCC – James. “Now it’s the subject of movies, books, major advocacy efforts and huge fundraisers. An explosion of information about cancer in the popular press and on the Web has made cancer more knowable and helped people feel more in control.”
This has paralleled a shift toward psychosocial concerns, both among professionals and patients.
“Over the past 25 years, professional caregivers have started writing more about psychosocial adjustments to cancer,” Andersen says. “There are still certain aspects of cancer and treatment that are less discussed, such as sexuality, but 25 years ago there was no talk.”
Despite this shift, she says, a gap remains between the prevalence of emotional distress over cancer and the awareness of services for treating it. “At least 25 percent of newly diagnosed cancer patients have clinical stress and anxiety disorders; it’s a problem that is often unrecognized or undertreated,” Andersen says. “Almost no studies have looked at how to help the cancer patient with clinical depression.”
From Cancer Patient to Cancer Survivor: Lost in Transition, a 2005 Institute of Medicine (IOM) report, notes that primary care physicians and other healthcare providers “often are not extremely familiar with the consequences of cancer and seldom receive explicit guidance from oncologists.” The IOM report contends that a “lack of clear evidence for what constitutes best practices in caring for patients with a history of cancer” contributes to the problem.
The report recommends establishing cancer survivorship as a distinct phase of care and calls for oncologists to provide patients with an individualized, comprehensive “Survivorship Care Plan” that the IOM believes should be reimbursed by third-party payers. Ganz has long promoted this idea.
She says that even when cancer treatment has been successful, patients should be followed for recurrence or late treatment effects. “They may experience persistent fatigue or pain that must be managed,” Ganz says, “and they are at high risk for second cancers, so promoting health behaviors that reduce that risk is important.
“There has been increasing uptake and use of these plans, mostly among early adopters,” Ganz adds. “And the American College of Surgeons has revised its guidelines to include preparation of treatment summaries and Survivorship Care Plans for patients by 2014 for accreditation purposes. This is pushing things forward.”
Shapiro says the medical world is in transition between two survivorship models.
“Whereas 10 to 20 years ago the focus was almost entirely on treatment, and survivorship was more of an uncoordinated, non-integrated afterthought, we now recognize that survivorship must be integrated into the continuum of cancer care from the outset, and that it must include health promotion and psychosocial support,” he explains. Flynn says the OSUCCC – James follows IOM survivorship recommendations by using nurse practitioners who provide patients with a summary of their treatment history and an individualized Survivorship Care Plan.
“The nurse practitioners provide transition educational materials and direct patients to specialty services offered by the OSUCCC – James, Ohio State’s Medical Center and the community,” Flynn says.
“With help from a great patient advocacy group,” he adds, “we are planning a Survivorship Support Center that will house, in one location, supportive services that include pain management, genetic counseling, spiritual counseling, nutrition counseling, psychosocial care – information that caters to their needs.”
But such comprehensive services are usually provided only at academic medical institutions, Brown notes. “Some 70 to 80 percent of cancer patients are treated in community hospitals, and many private practitioners don’t have the wherewithal to offer ongoing survivorship support,” she says. “Survivorship programs generally don’t produce revenue, so it’s hard for institutions to provide them.
“We need to work with third-party payers on broadening their coverage, especially in complementary or alternative medicine—which they generally don’t cover but that can benefit cancer patients, such as exercise programs to combat chronic fatigue.”
To reduce costs, Andersen believes institutions must focus on the patients who are most in need. “There’s a subset that have the financial resources and the know-how to access interventional services and don’t need help from people like myself,” she says. “My focus as a psychologist and cancer researcher is on patients in greatest need of help.”
Andersen and collaborators have garnered national attention with a psychological intervention for women treated for breast cancer. The research involved 227 women surgically treated for regional breast cancer. After a median 11-year follow up, the study showed that the intervention improved survival and reduced recurrence.
William Carson III, MD, a surgical oncologist at the OSUCCC – James who collaborated with Andersen on this work, says the data “show that reducing patients’ stress boosted the immune system, perhaps enabling it to destroy small tumor deposits that escaped chemotherapy.” He believes the study supports the idea that mental health mediates physical health.
Andersen has since acquired a $1.6 million NCI grant to train psychologists, mental health nurses and social workers to provide the intervention to breast cancer survivors.
She also has received NCI grants to study interventions for patients with recurrent cancer and for women treated for gynecologic cancer who have sexual difficulties. In addition, she has completed a pilot study of an intervention for cancer survivors with clinical depression.
Andersen is working as co-investigator and mentor with Joanne Lester, PhD, CRNP, a clinical assistant professor in the College of Nursing and member of the Cancer Control Program at the OSUCCC – James, on a randomized control trial to study the effect of survivorship care planning on distress in leukemia and breast cancer survivors.
“Prolonged stress among cancer patients can reduce quality of life and affect a host of physical factors, possibly including the risk of metastatic disease,” Lester says. She and colleagues will examine the level and nature of self-reported distress in early survivorship, measure the effect of the physician’s office visit on distress, and gauge the effect of survivorship care planning over time. Brown says survivorship research is invaluable to caregivers and patients.
“By focusing on issues that may occur after treatment, this research may also teach us what we can do better during treatment, such as intervening earlier to alleviate distress, to avoid problems later.
“We want to develop a model of survivorship care that can be replicated in any setting and a stronger evidence base for survivorship interventions,” Brown adds.
Today, the ability to better diagnose and treat cancer, and to help patients cope with life after treatment, has given patients new hope, Flynn says. “It’s more than just whether they can be cured, although that’s always the goal. It’s also about having a good quality of life, which many more survivors now have.
“So really the difference between life for cancer survivors in 1971 and today is like the difference between driving a horse-and-buggy and a Ferrari.”