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diagnosed with leukemia: managing support, resources and your care team
10 minute read
finding the right supports and making self-care a priority are crucial after being diagnosed with leukemia.
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what happens when you’re told you have leukemia? it’s a form of cancer that affects the blood and bone marrow, where you often don’t have symptoms that are visible on the outside of your body. the diagnosis may come as a complete shock.
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?”
prevost’s team is on the frontlines of incoming calls and emails to the society, listening and helping people through what can feel “like a blur” of trying to wrap one’s head around leukemia and how one’s life is going to change, she says.
“there is treatment, and the research is progressing, so there’s definitely hope when you get a blood cancer diagnosis,” prevost says. “people need to be reassured that there are things that can be tried. there’s support for them, and they’re not alone. some people have a need to feel understood because a diagnosis like this is a trauma, and trauma is very isolating.”
navigating your care starts with connecting with your support network to help you through the following key steps.
ask for help
as prevost points out, some cancer centres give patients binders about leukemia and treatment, but people are too afraid to open them. “they’re like, ‘what am i going to find?’ you need a person to help you navigate.”
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.
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“we cannot tell people to go on the website and find the information or send them a bunch of information and ask them to navigate the information themselves. that’s not how it works. we use a personalized approach to help them where they are,” she says.
this might begin with questions about the diagnosis and what kind of information they’re looking for. the society website offers resources like podcasts, personal stories, education programs, and guides on the different types of blood cancer.
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.
prevost says the caregiver role is an integral part of the healthcare team and the patient’s experience, but many family members who take on this role don’t self-identify as caregivers. the society aims to provide practical and emotional support for caregivers so they can better manage the responsibilities and make their own self-care a priority to avoid burnout and risk illness themselves. there’s also a peer support program for caregivers, matching them with someone who has lived a similar experience.
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.”
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learn more about leukemia
what is your diagnosis all about? there’s a lot to understand about the disease. getting informed helps to mitigate fear and uncertainty.
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.
another important point is that leukemia is not hereditary, and there is no clear understanding of why it develops or who is at risk, which makes everyone vulnerable. people like to know why it’s happened to them, but there’s no answer, says prevost.
and the disease has complexity. there are several forms (and subtypes) which can be characterized as acute and chronic. in acute leukemia, the abnormal blood cells multiply rapidly, so the disease worsens quickly. acute leukemia requires aggressive, timely treatment that may combine chemotherapy, radiation therapy, and immunotherapy (drugs to boost your body’s immune system to identify cancer cells and produce more immune cells to fight them.) a stem cell or bone marrow transplant could follow to introduce healthy new cells that can multiply and form new bone marrow and blood cells.
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.
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with chronic leukemia, the patient often begins with active surveillance to see if the cancer progresses. it may impede your ability to fight off infection, but if you’re not experiencing symptoms like fatigue, fever, night sweats or weight loss, moving to chemotherapy and other interventions can be put on hold.
both scenarios are difficult, prevost says. “it’s two different realities. you have people who are at work; the doctor is calling to tell them, ‘you need to go to the emergency room right away, where a doctor is waiting for you. you have a cancer that will rapidly evolve, and you need to start your treatment tomorrow.’”
whereas with chronic leukemia, “you sit in the doctor’s office and receive a diagnosis that most people think you are going straight to chemo, aggressive treatment, losing your hair, vomiting, and then getting better.” instead, these patients may go 20 years or more of monitoring without the cancer developing. “they’re thinking, ‘you’re not going to do anything to make me better?’ it’s extremely challenging to wrap your head around that concept.”
tell your family
for both acute and chronic leukemia, the most challenging milestone is not receiving the diagnosis – it’s delivering the news to your family.
“now that you know your world is so unstable, you need to go and do the same thing to your family,” prevost explains, adding people don’t always realize. “that’s why we think people should connect with us early after their diagnosis to get the optimal support from us because the beginning is very hard.”
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.”
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for example, appointing a family member to share the news and updates on your health allows you to focus on treatment and recovery and telling your children about your leukemia helps them open up about their fears and concerns and lets you ask them for help along the way with chores or simply keeping you company.
after eight years of working with the society, prevost has found that emotional support makes a difference in how people cope. she says the peer support program, for one, has received top evaluation over the years. these sessions can change the optics.
“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.
depending on your situation, you’ll also need support and guidance on how to tell your employer that you need to take time off work during treatment and recovery. employee assistance programs vary.
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.”
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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.
family and the support of resources available in the non-profit sector are invaluable when you’re faced with numerous concerns at a time when life already feels uncertain.
connect with your care team
diagnosing leukemia typically begins with a visit to your family doctor when a routine blood test suggests there may be a problem with your blood or you’re experiencing concerning symptoms like weakness, loss of appetite, weight loss or a general feeling of discomfort. next, you’re likely referred to a specialist or tests are ordered to check for leukemia or other health problems.
once your diagnosis is confirmed, working with your care team is critical. part of that is knowing what to ask so you can be prepared, notes prevost, whose team can also help with to-do list items like prioritizing questions and using an app to track side effects.
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
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throughout the patient journey, self-care has to be top of mind, although many patients in treatment experience brain fog and trouble coping.
“nutrition is a big challenge with cancer. you need to have enough calorie intake, but sometimes people are nauseous, there’s a bad taste in their mouth, and there’s a lot of challenge around that,” says prevost.
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.
“people have access to another source of information, they can verify their understanding, presented in a different way than what their doctor might have presented. we always try to be future-oriented and talk about the research and different things because if you have a relapse, you want to know that research is progressing and there’ll be even better options soon.”
reach out to the leukemia and lymphoma society of canada and the canadian cancer society for more information.
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