Danielle Hugo received life-changing news in 2008. The 53-year-old was diagnosed with follicular non-Hodgkin's lymphoma, a chronic blood cancer.
Since then, she has endured numerous rounds of chemotherapy as well as a stem-cell transplant in an effort to treat her cancer. It’s taken a toll on her health, increased her stress and reduced her bank account.
“My treatments are buying me time and prolonging my life, but they do come at a cost,” Ms. Hugo said from her home in Montreal.
Living with a blood cancer is something that thousands of people face every year. According to the Leukemia & Lymphoma Society of Canada (LLSC), more than 22,000 Canadians of all ages are diagnosed annually with blood cancers. But when that blood cancer is chronic, meaning it grows much slower than other cancers, there is an added toll on the patient.
Patients living with blood cancers often deal with relapses and years of treatment. It can be a long process and some live with the disease for the remainder of their lives. Tests, monitoring and treatment or procedures become part of their lives, redefining their new ‘normal’.
Ms. Hugo credits her positive attitude, support from family and the extensive medical treatments she’s received with helping her to face more than a decade of ups and downs as her cancer recurred after periods of remission. But when she talks about her need to work throughout her chemotherapy treatments, the stress in her voice becomes obvious.
“I wanted to work, but I also needed to work because of the cost of being sick,” Ms. Hugo says. While she has extended health insurance that covered some of the costs, they continue to pile up. “Even if you’re covered, you have to pay a percentage of that right away,” she says.
Ms. Hugo is not alone.
Financial stress while going through treatment for a chronic disease is common for many Canadians. However, there are resources to help cancer patients and their loved ones bear the financial hardship that illness and treatment can bring. Some employers provide extended benefits, including short- and long-term disability. There is also Employment Insurance-Sickness Benefit, and if the condition is severe and prolonged, there could be some financial assistance available from the Canada Pension Plan disability benefit.
“I wanted to work, but I also needed to work because of the cost of being sick.”
— Danielle Hugo, blood cancer patient
LLSC provides support resources for those living with and impacted by blood cancers, including local patient education and support managers. These specialists can offer guidance on financial matters, government programs, health coverage and employment rights. The organization can also connect patients and families to volunteers who have undergone similar experiences.
Aside from the physical and financial toll cancer often has on patients, there can also be a significant emotional impact when patients hear the term “incurable” in relation to their chronic disease.
Mona Shafey is an oncologist in Calgary and sees many patients with chronic blood cancers, but says the term “incurable” is one that she avoids because of the toll it can take on the patient’s well-being.
“When I meet a patient with a cancer that can be treated, I tell them just that – their cancer can be treated, and in many cases the cancer will go into remission, often for many years,” Dr. Shafey says. In fact, some patients don’t require treatment for many years, and then when they start, it could be decades before their disease requires additional treatment options.
But can people with chronic blood cancers live full lives?
“Absolutely,” Dr. Shafey says, adding that maintenance therapies have a lot to do with improving the quality of life for many of these patients.
Maintenance therapies are used when the patient’s cancer has gone into remission after an intense period of aggressive treatment. There are generally two types of maintenance therapy: pulse treatments (short courses of chemotherapy alternating with intervals of no treatment), and continuous therapies.
“Not only are these treatments keeping them cancer-free for longer, they are prolonging their lives too,” Dr. Shafey says. “They delay the need for intensified treatment, which can be disruptive to their everyday lives.”
Ms. Hugo received her first stem-cell transplant in 2012 and another one in 2014. The second surgery was possible because of an anonymous umbilical cord donation, which is when a woman donates her baby’s umbilical cord – rich in disease fighting cord blood – to a public blood bank. The donation has kept Ms. Hugo’s cancer dormant ever since, giving her years she “didn’t think she would get” with her husband, family and friends.
For Ms. Hugo, the last decade has been a roller coaster, but she refuses to let blood cancer diminish her zest for life. “I’m truly blessed,” she says.
For information on financial matters, health coverage and employment rights, visit llscanada.org/support/financial-matters
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