It’s like living with a ticking time bomb. That’s how people with chronic lymphomatic leukemia (CLL) describe their illness because they never know when their health will take a turn for the worse.

This incurable cancer usually develops slowly with no outward signs that the individual is sick—but they are and need assistance from their employers.

“CLL is a cancer of the blood and bone marrow that affects people in middle age or older, often in their peak earning years,” explained Robin Markowitz, CEO of Lymphoma Canada at Benefits Canada’s Employers Cancer Care Summit in Toronto on Wednesday.

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“It’s not a typical cancer because, for the most part, it has few symptoms,” Markowitz added. “Patients may think they’re coming down with the flu and only find out they have CLL from a routine blood test. So it can be a shock.”

Some people require treatment immediately, but most are simply monitored through regular blood tests until their condition worsens.

“Patients find this difficult because they’ve heard again and again that if cancer is caught and treated early the outcome is hopeful,” said Lucy Di Carlo, national manager, patient education and support, with the Leukemia and Lymphoma Society of Canada. “This isn’t the case with CLL. Treatment is not always necessary right away and, if it is, it’s to extend life. They don’t know when and if their condition will worsen. So there’s a great deal of anxiety and a fear of the unknown.”

For organizations, education is vital. Because CLL sufferers can look healthy, many choose not to disclose their illness for fear of being passed over for promotion or being part of exciting projects because no one knows if they’ll be well enough in a few months.

“That stigma costs patients the ability to share and seek support and increases their anxiety,” said Markowitz. “And if they do disclose, people will think CLL is like other cancers—they’ll be very ill, lose their hair and be off work—and when that doesn’t happen, they’re suspect.”

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In addition, even with treatment, the cancer always comes back and another form of therapy is required. “For the CLL patient, it’s a continuum over many years,” she said.

How else can employers help? One of the most important ways is to encourage all employees to get flu shots and not come into work sick.

“CLL patients are severely immune compromised so the flu can be fatal,” says Lorna Warwick, a board member with the CLL Patient Advocacy Group. “Chronic fatigue is another major issue so being able to provide help by adjusting shifts or allowing people to work from home can make a huge difference in their ability to remain productive.”

The good news is that there is hope.

“In the past, treatments were limited and had significant side effects,” said Markowitz. “But new treatments—especially the new oral therapies—are less invasive. They’re exciting because they manage the condition as a chronic disease, like diabetes, without having to take time off work to go to the hospital for treatment. They allow people to continue with their lives in a pretty normal way.”

Despite the ticking time bomb.

Additional coverage of the summit will appear in the May issue of Benefits Canada.

Want other related articles? Click here for more stories about cancer.

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Copyright © 2019 Transcontinental Media G.P. Originally published on benefitscanada.com

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