diagnosed with leukemia: managing support, resources and your care team

the fears of people on the receiving end of the news are very similar, says nadine prevost, business unit director of research and community support for the leukemia and lymphoma society of canada : “am i going to die? is there effective treatment to manage the disease? am i going to pass it to my children?”

ask for help

reaching out to the leukemia and lymphoma society of canada , for example, the national charity dedicated to funding research and empowering canadians with practical tools and emotional support will give you a direct connection to a trained support person. they can help prepare a list of questions for your doctor and prioritize them in case you don’t have time to review them all, find a therapist in your community for counselling, or connect you with a peer for ongoing support who has been in your shoes and is doing well today.

you can call the helpline at 1-833-222-4884 or email info@bloodcancers.ca for assistance. the helpline and email are also available for healthcare professionals and caregivers. there are continuing education programs for professionals available through the society as well, like the role of nurses for helping secure public funding for cancer medications, understanding the needs of gender diverse people, and helping manage the fear of cancer recurrence in survivors.

the organization is further tailoring services to meet needs identified by market research it published in the spring 2024 canadian oncology nursing journal, authored by prevost. while one-to-one and peer support needs were flagged in the research, there was also a call for help with practical issues: “people with a blood cancer and their caregivers told the market researchers they were looking for practical information on a wide range of issues. these issues included costs of medical travel, dealing with insurance companies, how to plan for short- and long-term disability and taking a leave from work, how to reintegrate back into the workforce after cancer, and how to plan for the future. other practical topics of interest expressed by individuals affected by a blood cancer included how to manage chronic pain, when is it appropriate to return to exercising, what are the best and most nutritious foods, and how to stimulate appetite when taste buds are impacted by treatment.”

learn more about leukemia

your white blood cells are potent fighters for infection. they grow and divide in an orderly way as your body needs them. but with leukemia, the bone marrow produces an excessive amount of abnormal white blood cells which don’t function as they should. these leukemia cells crowd out the cells trying to develop into healthy red blood cells, white blood cells and platelets, according to the cleveland clinic . as a result, fewer health-promoting cells and platelets are released into your bloodstream, so organs and tissues don’t get enough oxygen, and your body won’t be able to fight infection or form blood clots when needed.

also, chimeric antigen receptor, or car t-cell therapy, is a novel therapy available in some provinces in which a type of your body’s immune cell is engineered to fight leukemia cells and infused back into your body. the national research council canada is working with researchers to further develop the therapies and make them affordable and accessible to canadians.

tell your family

the society has tips on how to tell your family and notes that most people find it best to be honest with family and friends: “by confiding in loved ones, you give them the chance to offer their support. it’s true that some of your relatives or friends may not know what to say or do. but most do want to be supportive.”

“they can change the way the person perceives what’s going be the trajectory and what’s going to come after, putting the person in a better place to face what will have to be faced.” a 2022 review of the literature on peer support intervention in oncology in patient education and counseling found that these supports have significant effects on improving quality of life, alleviating depression and anxiety, and improving self-efficacy in patients. researchers also recommended peer support as a complementary approach to traditional healthcare services during cancer rehab.

as the canadian cancer society outlines , the federal employment insurance program now provides sickness benefits to people unable to work for up to 26 weeks. however, legislation for job-protected leave for employees varies among provinces and territories. and despite having a universal healthcare system, out-of-pocket costs to people going through a cancer diagnosis in canada can be another huge stressor:

“a  2021 systematic literature review  led by the canadian partnership against cancer highlighted that people in canada spend an average of $253 per month on out-of-pocket costs – adjusted to 2023, this amount is currently estimated at $290 per month. these costs can be associated with anything from medications and caregiver expenses, to getting to appointments and other travel costs. each expense adds up at a time when patients may be unable to work due to their illness. it can take between 6 to 10 months to treat and begin to recover from some of the most common types of cancer.”

a national survey released by the canadian cancer society in 2024 found that 90 per cent of people in canada feel a sudden cancer diagnosis would impact their household finances.

connect with your care team

your cancer centre will have a team of experts, including radiologists, lab technicians, oncologists, nurse practitioners and oncology nurses, general surgeons, dietitians, social workers and mental health support professionals. for instance, one of canada’s leading cancer centres, the university health network princess margaret cancer centre in toronto, offers patients guides to information and services and dedicated clinic nurses to contact with questions.

after active treatment, your oncologists and primary care provider will share the job of check-ups, and oncology nurses on your care team can also be an important source of information for follow-up clinic visits and further support, notes the princess margaret cancer centre.

make self-care a priority

finding a balance between physical well-being and mental health is key as well, with resources outlined on the leukemia and lymphoma society of canada website, like journaling and mindfulness, art therapy and knowing when to seek professional help for mental health. while professional services through cancer centres are available, there may be long wait times, so the society is there to help link you to a professional in your local community.

support and information help empower patients and their families, prevost says. the society has monthly webcasts to connect to and the national virtual leukemia conference in november .