While newer medicines and procedures have significantly improved cure rates in people with leukemia, some therapies can lead to long-term medical problems down the road. Additionally, many cancer survivors experience a wide range of emotions, including joy, relief, guilt, sadness, anxiety, and fear. Knowing the risks associated with treatment, finding support, and utilizing resources can help survivors thrive. (1)
What Are Long-Term and Late Effects?
Long-term and late effects of cancer therapies are medical issues that persist or crop up months or years after your treatment ends. They can occur in both adult or childhood cancer survivors. These problems may be due to chemotherapy, other medication, radiation, or stem cell transplants. Many leukemia patients don’t experience any serious long-term effects. But research suggests that the majority of cancer survivors who receive chemotherapy and radiation have at least one physical, psychological, or social late effect after their treatment is completed. (2) Your chances of developing long-term problems will depend on:
The type of treatment you hadHow long your treatment lastedYour ageYour medical conditionYour gender (3,4)
RELATED: Cured of Cancer, But at a Cost
Common Late Effects for Leukemia Survivors
Leukemia survivors might experience late effects, such as:
Chronic heart conditionsLung damageLiver diseaseInfertilityReduced bone densitySecondary cancersFatigueLearning issuesBrain and nerve dysfunctionHearing lossThyroid issuesPsychological distressCognitive or memory problemsGrowth delays (in children) (2)
Spotting these effects early on is helpful so that your doctor can suggest treatments to improve your symptoms and condition. RELATED: Leukemia Treatment Have Vastly Improved Over the Years
Special Issues for Young Survivors
Although children and adults who survive leukemia face many of the same physical and emotional risks, some kids encounter distinct challenges. For example, children with cancer aren’t finished growing, so they might face growth delays because of treatment. While adults may struggle with fertility problems due to treatment, they may have already had the chance to conceive. Some children with cancer are denied this opportunity altogether. Children may also have a more difficult time managing their emotions than adults do. Also, kids with cancer might miss a lot of school and have trouble readjusting to academic life when their treatment ends. Parents may have to work with school administrators and staff to make special accommodations for their kids. (4)
Follow-Up Care for Survivors
Follow-up care is extremely important for leukemia survivors. Regular checkups can help your doctor monitor your condition, spot cancer recurrences, and identify any long-term or late effects of treatment. The Leukemia & Lymphoma Society suggests that cancer survivors should see their primary care doctor for a yearly exam or more often if needed. They should visit their oncologists regularly as well. (3) At each follow-up appointment you have, it’s a good idea to:
Tell your doctor about any physical or psychological symptoms you have.Write down what you discussed with your doctor.Ask your doctor if you need any follow-up tests.Discuss any previous test results with your physician.Request copies of all lab reports and test results, and keep them in a file.Keep a list of all medications you take.Mark future appointments on your calendar.
Some facilities offer follow-up cancer care clinics that provide special resources for survivors. Many of these programs specialize in pediatric cancer care, but there are also some available for adult survivors. (3)
Taking Care of Yourself
Self-care is extremely important for cancer survivors. In addition to keeping all your doctor’s appointments, try to:
Eat healthy. Include lots of vegetables, fruits, and whole grains in your diet. Try to stay away from processed foods. You might want to eat four or five smaller meals each day, instead of just three.Exercise. Physical activity can boost energy and improve your health. But talk to your doctor before starting an exercise program.Get enough rest. Adequate amounts of sleep are important for cancer survivors. Let your healthcare provider know if you have difficulty sleeping at night.Quit smoking. Quitting or avoiding smoking is one of the most important health decisions you can make. Your doctor can equip you with tools to help you quit. (5)
Coping With Psychological Effects
According to the American Cancer Society, up to 1 in 4 people with cancer have clinical depression. (6) Others suffer from anxiety, fear, or stress. These conditions also affect survivors. Signs of depression may include:
Feelings of sadness, hopelessness, or worthlessnessWeight gain or weight lossLoss of interest in everyday activitiesExtreme fatigue or loss of energyTrouble sleeping or sleeping too muchThoughts about death or suicide (6)
Many people also worry about the cancer coming back. This fear can be intense and affect a person’s ability to eat, sleep, and enjoy life. Talk to your physician if you experience any of these symptoms. Therapy and other treatments are available to help survivors cope.
Finding Leukemia Support and Resources
Many cancer survivors benefit from online or in-person support groups. These groups help you connect with others who’ve been through a similar journey. There are also support groups designed for parents of children with cancer. Staying informed may also help you feel empowered as a survivor. The American Cancer Society and the National Cancer Institute both provide reliable and up-to-date information about leukemia. You might also want to ask friends or family members for assistance if you need it. Don’t be afraid to speak up if you feel overwhelmed. Additionally, several organizations offer resources and support for survivors. Some include:
The Leukemia & Lymphoma SocietyNational Cancer Institute: Office of Cancer SurvivorshipCenters for Disease Control and Prevention: Cancer Survivorship Care PlansAmerican Cancer Society: National Cancer Survivorship Resource CenterAmerican Society of Clinical Oncology: Survivorship
