New research has found that cancer generally does not have a negative impact on an individual's long-term employment and the ability to work, but that there are still problems.
“I expected the results to be mostly good news, showing that most cancer survivors work as much as anyone else,” lead study author Pamela Farley Short, PhD, Professor of Health Policy and Administration and Demography at Pennsylvania State University, said in an interview. “We found, though, that a significant minority have ongoing problems related to work.”
For the study, published earlier this year in Cancer (2005;103:1292–1301), she and her colleagues Joseph J. Vasey, PhD, and Kaan Tuncelli, PhD, interviewed 1,433 cancer survivors for a period of about one year to nearly five years after diagnosis. One of five survivors reported having cancer-related disabilities at follow-up.
Half of the survivors with disabilities were working. A projected 13% of all survivors had to quit working for cancer-related reasons within four years of diagnosis. More than half quit working after the first year, when three quarters of those who stopped for treatment returned to work.
A variety of factors can influence a patient's ability to cope in the workplace, said Dr. Short and others interviewed for this article.
Remissions vs Metastatic Disease
How patients cope in the workplace is heavily influenced by whether or not they are in remission or have metastatic disease and are still receiving treatment, said Sandra Franco, MD, a breast oncologist at Memorial Breast Cancer Center in Hollywood, FL.
Some people are diagnosed, receive therapy, go into remission, and no longer require active treatment, while others require ongoing therapy and palliative care that can impact how they feel physically and mentally, interfering with work, she explained.
Added Dr. Short: “I imagine that patients with a recurrence are more likely to exhaust their sick leave and other options for taking off work, especially paid time off work.”
Type of Cancer, Stage of Diagnosis, Treatment
The type of cancer, stage of diagnosis, and the associated treatment may also play a role. In Dr. Short's study, survivors of central nervous system, head and neck, and Stage IV blood and lymph cancers had the highest adjusted risk of disability or quitting work.
The higher risk may reflect the stage of diagnosis, the effects of the type of cancer, and both the positive and negative effects of treatment, she explained.
Consider brain cancer, which can affect how well survivors see or hear, how well they think, and how well they move; all three are important in most kinds of work. Blood cancers like leukemia are treated with chemotherapy that affects the patient's entire body, while the treatment of solid tumors is more focused. The excision of head and neck cancers can be disfiguring, and may result in survivors having difficulties with eating, talking, and swallowing.
In contrast, Dr. Short continued, consider the success of public health efforts to increase the percentage of women who get mammograms. More patients are diagnosed earlier, when they don't have to be treated as aggressively and the treatment is more likely to be successful.
Dr. Franco noted that as she has seen in her own practice, breast cancer treatment can affect patients' ability to work. For example, although chemotherapy may be much more debilitating than tamoxifen, aromatase inhibitors, or monoclonal antibodies, chemotherapy may also typically be given for only a short period of time, lessening the length of disability. Additionally, antinausea medications and growth factors to support blood counts, preventing anemia and neutropenia, make chemotherapy much more tolerable.
Dr. Franco generally deals with a healthy group of patients. A large number of women are diagnosed and continue work right through their initial chemotherapy treatments, particularly if they receive chemotherapy in the adjuvant setting. Some patients choose to go on disability during chemotherapy, but about 90% return to work, Dr. Franco said.
One of the most common problems patients with cancer may encounter is fatigue, which can be caused by chemotherapy or radiation as well as by the cancer itself.
“Fatigue at work can be a huge issue for people with cancer,” said Karen Kell Hartman, LCSW, Survivorship Program Coordinator at Cancer Care in Woodbury, NY.
Flexible or reduced work schedules, or even allowing someone to take a nap at work, can help a survivor to work around fatigue, Dr. Short said.
In addition to fatigue, patients usually envision chemotherapy as preventing them from going back to work because of unpleasant side effects such as nausea and vomiting, said Karen R. Stephenson, RN, MSN, MBA, CNS/Coordinator of Oncology Services at Miami Cancer Center at Mercy Hospital. “But that's not the way it is anymore. We have a lot of medications to control the side effects of chemotherapy.”
Occasionally a patient undergoing chemotherapy may have poor tolerability, despite antinausea medications and other supportive care, Dr. Franco said. These patients can participate in nutrition and exercise programs to help them recover from their treatment more quickly, helping them to more readily cope in the workplace.
Another potential problem that people may encounter during and after chemotherapy is the well-known phenomenon of “chemo-brain.” The problem has been studied more in women than in men, and is characterized by memory problems. Some patients may opt not to work if they are experiencing this side effect, Dr. Franco said.
Surgery to remove a cancerous tumor can also create difficulties, Ms. Hartman added. It can sometimes affect mobility, either permanently or temporarily, while they recuperate.
Sometimes therapy can interfere with work depending on what part of the body is receiving the treatment, Ms. Stephenson said. For example, undergoing radiation to the gut or esophagus can sometimes have gastrointestinal side effects, such as nausea and vomiting, which can keep some patients out of work, sometimes only intermittently.
The Issue of Privacy
In addition to the physical side effects of cancer and treatment, patients must contend with the question of whether to share their diagnosis with employers and coworkers.
“The main issue that people talk about is privacy,” said Leslie Fetchen, LMSW, a social worker at Irving Cancer Center, part of the Baylor Health Care System. “Patients ask, ‘How much should I tell my employer, and how much should I keep private?’”
The answer usually depends on where you work and with whom you work. For example, Ms. Fetchen described the employment experience of a male patient diagnosed with carcinosarcoma of the neck, which required surgical removal of the tumor and surrounding neck tissue.
He did not worry about telling his employer about the illness and wanted his primary focus to be on his treatment and recovery. His supervisor was very overtly sympathetic, but questioned the man's ability to handle his workload or to find someone to take over his responsibilities.
Because of his treatment, the patient had ongoing pain in his jaw and neck but was ready to return to work before even his physician thought he would be. “He was really grateful to get through his cancer and as a survivor wanted to show people that he beat the disease,” Ms. Fetchen said.
Unfortunately, though, shortly after completing treatment, the patient lost his job. “He thought his supervisors probably lost faith in him,” Ms. Fetchen said, adding that fortunately in this case there is a happy ending: He was able to find a better job elsewhere.
He opted not to take legal action because he wanted to focus on becoming well. He was originally given a prognosis of three to six months, but now nine years later he is still in remission, she said.
Ms. Hartman said she occasionally encounters patients who have been fired because of their cancer or who were not treated well by their employer because of fatigue or other side effects associated with the disease and treatment. Sometimes, these patients will decide to take legal action through the US Equal Employment Opportunity Commission (EEOC).
Other times the discrimination is more subtle. For example, negative comments from coworkers can be a problem and can give the patient a sense of vulnerability.
However, most people seem to have employers who are understanding and allow the patient to take time off work, Ms. Hartman noted. Cancer Care gives presentations to employers and patients to help them understand how EEOC laws protect both the patient and the employer.
Although patients may opt not to tell their employer about their cancer diagnosis, employers are then not obligated to implement time off as required by the Family and Medical Leave Act (FMLA), Ms. Hartman said. “As cancer becomes more of a public concern, there's less a sense that it is important to keep it private.”
Benefits of Returning to Work
Despite some of the difficulties survivors may encounter in the workplace, going back to work can also help with psychological recovery.
“Every patient is concerned about her ability to work,” Dr. Franco said, noting that patients are often surprised when she encourages them to go back to the office. “It keeps their mind occupied and as long as they feel well physically, it can have a positive psychological effect on the patient.”
Vincent Caggiano, MD, a medical oncologist at Sutter Cancer Center in Sacramento, CA, said he makes a point of encouraging his patients to remain active during and after treatment. This activity often includes going back to work, he said.
When his wife, Biba Caggiano, a chef and owner of the popular Biba Restaurant in Sacramento and the author of several cookbooks, was diagnosed with breast cancer in July 2001, Dr. Caggiano encouraged her to work as much as she could. “I encouraged her to work because I see too many patients become emotionally crippled from a diagnosis of cancer and enter a depressive tailspin,” he said, adding that he was not his wife's treating physician.
Ms. Caggiano, also interviewed for this article, underwent chemotherapy, lumpectomy followed by radiation, and then hormonal therapy. With her first cycle of chemotherapy she experienced four or five days of nausea and vomiting, but returned to work shortly thereafter. She occasionally cut back on her hours or would go home to take a nap in the afternoon, a luxury she said she acknowledges many cancer survivors don't have in the workplace.
She credits her ability to work throughout chemotherapy to proper nutrition and taking antinausea medication and epoetin to treat anemia and deter fatigue.
“It was an emotionally wonderful thing to come to work,” she said, adding that friendships with the kitchen staff and her customers provided a good support system.
What the Oncology Community Can Do
When helping patients weigh the decision to return to work, health care professionals need to be sensitive to the fact that each person's workplace environment is different, said Leslie Fetchen, LMSW, a social worker at Irving Cancer Center, part of the Baylor Health Care System.
Some places of work may be an asset to the patients, while others may be an added stressor.
Pamela Farley Short, PhD, Professor of Health Policy and Administration and Demography at Pennsylvania State University, noted that to help alleviate problems associated with returning to work, oncologists can conduct more studies that track patients from treatment into long-term survivorship, to identify lingering and late effects of specific treatments such as lymphedema, second cancers, sexual dysfunction, psychological, or cognitive problems.
“Then maybe the dosages can be adjusted or the techniques changed to reduce the harm to patients who survive the treatment,” she said, adding that as the likelihood of successful treatment has increased, there is more room to alter treatments without greatly risking the lives of patients.
It's also important for the oncology community to reassure employers that most cancer survivors can and will continue to work and are just as productive as anyone else, Dr. Short said. “Many people, including lots of employers and supervisors, unfortunately still think that being diagnosed with cancer is a death sentence.”