To Tell or Not to Tell

For cancer survivors, workplace discrimination is a thing of the past—or almost. Laws passed in the 1990s such as the Americans with Disabilities Act and the Family Medical Leave Act now protect employees, allowing them to modify their working environment or leave it for periods of time and still have a place to return. But challenges remain.

For instance, while these protections cover most of the estimated 3.2 million cancer survivors in the U.S. workforce, the laws don’t cover everyone. Smaller firms do not have to adhere to the ADA or FMLA. In addition, some survivors have decided that disclosing a cancer history can still be a big mistake when trying to climb the corporate ladder or when vulnerable to being swept up in corporate turmoil that can lead to job losses.

At the same time, not telling your history or condition to your company will keep you from getting the very protections the laws allow, says Carolyn Messner, DSW, director of education and training for CancerCare, a non-profit organization that provides free professional support services to anyone affected by cancer.

Many people with cancer are able to work, she says. If you don’t disclose your health situation, you don’t have the ADA protection that can require employers to make workplace accommodations such as flexible working hours (flex-time) or a change in work duties.

That same protection carries forth after treatment for survivors, Messner adds.

The 12 weeks of unpaid leave each year allowed under the FMLA can be taken an hour at a time for doctor appointments, physical therapy, shortened workdays due to fatigue or chronic pain, or other accommodations needed post-treatment, she says.

In addition, the FMLA can help cancer survivors who find themselves back in treatment. The law allows for time off with job protection for patients as well as caregivers, Messner says, and companies must continue group health benefits on the same terms as if the employee continued to work. Pension or other retirement plans also continue during leave under the FMLA for purposes of vesting and eligibility to participate.

Despite this protection, your decision to disclose your cancer history or a recurrence of your cancer to your employer will require careful consideration.

Four federal laws governing discrimination in the workforce are relevant for cancer survivors, says Barbara Hoffman, JD, legal research and writing professor at Rutgers University School of Law and a Hodgkin’s lymphoma survivor. The laws include primarily the ADA and the FMLA, with further coverage for some under the Employee Retirement Income Security Act and Federal Rehabilitation Act.

“Instances of discrimination seem to be going down, and it does correlate to when the ADA and FMLA were passed,” says Hoffman. “You can’t plug every hole, but we have made an awful lot of progress.”

Research studies asking cancer survivors to reflect back on their experience during treatment support Hoffman’s conclusion.

A 2007 study from Virginia Commonwealth University’s Massey Cancer Center, published in the journal Cancer Investigations, found that among almost 500 breast cancer survivors and 300 prostate cancer survivors surveyed, nearly 90 percent of women and 85 percent of men were accommodated by their employers with time away from work during their treatment.

A change in job responsibilities, if required, also was generally accepted by employers during treatment, said the study’s lead researcher, Cathy Bradley, PhD, a professor of health administration and the co-program leader of the Cancer Prevention and Control Program at the Massey Cancer Center. Job responsibility change meant employers were willing to shift work to other employees while the patient was undergoing treatment, she says.

A similar survivor survey conducted in 2006 by the pharmaceutical company Amgen showed that employers accommodated requests made by cancer patients and caregivers. The survey was conducted in collaboration with the National Coalition for Cancer Survivorship and The Wellness Community (now called the Cancer Support Community).

In most cases, requests for time off for doctor appointments, flex-time, rest time, telecommuting, reduced travel and change in job duties were granted by employers, the survey of more than 1,000 cancer survivors and caregivers found.

“The survey suggests that very few requests are denied, thus implying that cancer patients and caregivers simply need to ask for help,” according to an overview of the research.

Hoffman said the Amgen study reflects a sea change in workplace discrimination issues for cancer survivors, compared with the time before the ADA and FMLA.

“This generation is experiencing a much improved workplace environment from previous generations,” she says. “Before the ADA and FMLA, many employers assumed that workers who were diagnosed with cancer would be unable to perform their jobs. Survivors were fired, demoted, and denied benefits more often than their co-workers.”

Bradley adds that most such studies to date have been done on professional women with full-time employment, while little research has focused on the working poor.

For survivors whose cancer returns, Hoffman recommends being upfront with employers.

“If you’re working when you are diagnosed and need some kind of accommodation, you must tell your employer why you need an accommodation,” she says. “Try to work out a reasonable plan with your supervisor or with the person in charge of your human relations department.”

Messner at CancerCare agrees that continued communication, supported with documentation of health-related requests from a healthcare provider, written in plain English, is key to using the laws for post-treatment needs.

“Show your letter to a social worker, oncology nurse or support group before giving it to your employer,” she advises. “The person receiving it needs to understand your request. Keep your language simple—less is better than more.”

Patrick Garbe, 48, had such a discussion with his employers at a New York City law firm when a malignancy was first found in his neck. A paralegal at the time, he says his employers were “very understanding” about his treatment, which required surgeries that kept him out for months at a time, then radiation appointments that he attended over extended lunch periods.

“My direct supervisor was not only accommodating, but gave me something to work on that was appropriate for my hours and put me on cases with people with some understanding of my condition,” he says.

After he finally finished treatment, Garbe said his employer assigned him to a team preparing for a large trial.

“I worked extremely hard, excited to be involved and making overtime again,” he says. “Fortunately I didn’t need to stop that streak because of more recurrences. Through several more trials and thousands of billable hours I kept an open and honest discussion with the office about medical updates, treatments, physical therapy and counseling.”

Cancer survivors have a long history with the ADA. In fact, the first ADA claim to reach a jury was a cancer-based discrimination complaint.

Charles Wessel, 59, executive director of a security investigation company in Illinois, was fired in July 1992, days after the ADA was made effective, when the company owner learned that Wessel’s lung cancer had spread to his brain. A federal jury found the ADA was violated and awarded $200,000 in compensatory and punitive damages.

Today, more than 3 percent of all complaints filed under the ADA are from cancer survivors, according to a study on ADA claims published last September in the Journal of Cancer Survivorship. Data from the federal Equal Employment Opportunity Commission, the agency with which claims must be initiated, show that meritorious cases filed since the inception of the law through 2007 involve employees with everything from asthma to visual impairment, orthopedic impairment, depression and diabetes among the leading causes of disability.

The study of ADA claims showed that compared with others filing complaints under the law, cancer survivors were more likely to file disputes related to termination and to being treated differently regarding benefits and other terms of employment.

Another study of cancer survivors’ filings under the ADA showed their cases had a greater degree of merit, as determined by the Equal Employment Opportunity Commission, compared with non-cancer-related ADA filings.

“Merit is basically determining that resolutions favor the claimant—a resolution without merit favors the responding party or employer,” says Maureen McKenna, PhD, a Hodgkin lymphoma and breast cancer survivor and lead researcher on the 2007 study, published by the journal Work.

If a case filed under the discrimination law is found meritorious by the employment opportunity commission, the employer and employee must go through mediation with the commission to resolve their differences. If the case doesn’t reach a resolution, the commission or the employee may file a lawsuit against the company in federal court, McKenna says. If an ADA case is not found meritorious by the commission, the employee still can sue the employer.

Although legal protections are in place, survivors may still fear their cancer history will create career obstacles.

Case in point is Holleman, 62, the banking executive from Dallas who went to great lengths to hide her condition when her breast cancer recurred many years later in her lymph nodes and under her left arm, and then again five years later when the cancer spread to her liver.

During her initial experience with breast cancer, she was appalled by the way her colleagues treated her upon her return to the office.

“I had handled the surgery beautifully. I looked healthy and vibrant. I was really feeling good about myself,” she says. “But when I got back to the bank, all I heard was, ‘Poor Kay, bless her heart.’ I thought to myself, ‘What the hell have I done? No one is going to listen to me. They’re too busy feeling sorry for me.’ ”

When the cancer came back 12 years later, she was no longer working with the people who knew her health history, and she had moved into a high-profile management position.

“I was a senior vice president, a regional executive, and my boss was on the East Coast,” she says. “I felt like I had too much to risk to tell. I was not going to have people discounting me again.”

Holleman chose to tell her employer, a major banking firm, that she was going on an extensive European vacation while preparing for chemotherapy for the cancer in the lymph nodes. Five years later, she said she was having a hysterectomy instead of surgery to remove the cancer from her liver. She had a wig made out of her own hair to cover the hair she lost twice during treatments.

“My bank had discrimination laws; I helped write some of the policies,” she says. “But honestly and truly, in a merger, if you had two executives equal in capabilities, you would get weeded out with a perceived flaw like cancer.”

Holleman said she didn’t disclose her cancer history until her retirement party in 2003 at the swanky ballroom of the former Four Seasons hotel, when she told 500 colleagues she was going to write a book about her experience working with cancer.

“I saw jaws drop, flabbergasted expressions,” she writes in her book Hiding Behind the Mask: In the Corporate Closet With Cancer. “I cannot describe the incredible sense of freedom I felt in that moment. My cancer was ‘me,’ just as much as was my face or my work ethic or my love of classical music.”

My direct supervisor was not only accommodating, but gave me something to work on that was appropriate for my hours and put me on cases with people with some understanding of my condition.

I was a senior vice president... and my boss was on the East Coast. I felt like I had too much to risk to tell. I was not gong to have people discounting me again.