After a successful treatment regimen for leukemia, your doctor might give you the good news that you’re in remission. This means that cancer cells can no longer be detected in the body. Although remission is a milestone that people in leukemia treatment hope to reach, it is not the end of the road. There may still be low levels of cancer cells that are present but cannot be detected. These residual cells (or residual disease) pose a risk for relapse, which occurs when cancer reappears after a period of time.

What Treatment Side Effects Can Happen After Remission?

To reduce the risk of relapse and eliminate residual disease, cancer survivors must have regular follow-up visits with a health care provider. These visits are necessary to monitor the disease and involve additional follow-up treatments to kill off remaining cancer cells.

Long-term monitoring also includes watching for side effects of cancer treatment. Late side effects may appear months to years after completing treatment, and can include:

• Secondary cancers
• Fertility issues
• Heart or thyroid problems
• Tissue damage and other physical effects
• Cognitive effects

Late effects that arise as a result of leukemia treatment vary depending on the type of treatment received and the person’s age and gender.

Causes of Late Side Effects

One of the primary treatments for leukemia is radiation therapy, which acts by causing damage to cells. The cancer cells are sensitive to this damage and die as a result. Although radiation may be successful at treating the original disease, normal healthy cells are also affected by radiation, potentially leading to late side effects. Total body irradiation (TBI), in particular, is associated with more severe side effects because this type of treatment causes damage to more of the body’s cells.

Treatment with chemotherapy can also increase the risk of developing unwanted side effects later in life. As with radiation, the effects of chemotherapy damage healthy cells in addition to the cancer cells. Although there are several different types of chemotherapy drugs, certain drugs, such as alkylating agents and anthracyclines, have been associated with a risk of secondary cancer development in people with leukemia.

Secondary Cancers

A major concern for leukemia survivors is the risk of developing another type of cancer later in life as a side effect of treatment. Those treated for leukemia as children or young adults are most at risk of developing a secondary cancer as adults.

Blood Cancers

Cancers of the blood and bone marrow have long been recognized as a long-term side effect of radiation. The type of cancer that arises most commonly as a result of treatment is acute myeloid leukemia (AML), which can occur in people who were originally treated for acute lymphocytic leukemia (ALL).

Solid Tumors

Female survivors of cancer who were treated with chest radiation at a young age are at higher risk for developing breast cancer later in life. Additionally, men with chronic myelogenous leukemia (CML) have displayed an elevated risk for developing certain cancers after treatment, including oral cancer, prostate cancer, and cancers of the gastrointestinal tract. Other types of cancer such as thyroid cancers and osteosarcoma are also a potential late effect in cancer survivors.

Fertility Issues

Treatment for leukemia can also affect a person’s ability to conceive a child later in life. Fertility issues occur due to radiation and chemotherapy causing damage to a person’s eggs or sperm, the cells responsible for reproduction and forming a new embryo. Potential problems with fertility can be a concern for people with different forms of leukemia, as radiation remains a common treatment. Knowledge of the potential impact of leukemia treatment on their fertility may allow people to plan for the possible outcomes.

Heart and Thyroid Problems

People with acute myeloid leukemia (AML) receive treatments that can cause damage to the heart. Chemotherapy drugs known as anthracyclines have been linked to a higher risk of heart injury and failure. Additionally, thyroid problems may also arise in people, especially childhood cancer survivors treated for AML or ALL. Thyroid diseases may include hypothyroidism, hyperthyroidism, or in some cases even thyroid cancer.

Tissue Damage and Other Physical Effects

Radiation therapy damages tissues and can cause scarring and inflammation. Specifically, leukemia survivors may experience damage to the heart and lungs as a result of radiation to the chest. Other physical late side effects include vision problems (such as cataracts), osteoporosis, dental issues (such as excessive cavities), and hearing loss.

Cognitive Issues

Aside from the potential physical late side effects of treatment, cognitive issues are also a risk and concern for survivors of leukemia. Memory and concentration may be negatively affected as a result of treatment, sometimes referred to as “chemo brain” or “chemo fog.” Children with AML and ALL may be treated with therapies that affect the central nervous system (CNS), such as methotrexate or total body irradiation. Their effects on the CNS may negatively affect learning in school and the ability to retain information for children who survive cancer.

Prevention and Risk Management

Due to the effectiveness of radiation therapy and chemotherapy in treating leukemia, dealing with the risk of developing a long-term or late side effect is an unfortunate reality of current treatment options. Although there is no way to definitively predict the chance of developing another type of cancer, maintaining continued follow-up appointments with a health care provider is crucial for monitoring side effects and catching any evidence of disease early. The earlier a disease is caught, the earlier treatment can start. Particularly in the case of secondary cancer, early detection and treatment can help improve the likelihood of getting the disease under control.

Because total body irradiation and high doses of radiation increase the risk of unwanted side effects, radiation therapy should generally be administered locally and at the minimal effective dose whenever possible. These precautions help minimize the number of cells affected by radiation and can help reduce the chance of long-term damage to the body. Talk to your doctor about your options.

Cancer survivors can reduce their risk of long-term side effects by keeping up their physical health through diet and exercise. Survivors can help manage cognitive side effects by practicing organizational and memorization techniques to lessen the impact on quality of life. Keeping a symptom journal is also recommended to help your health care providers monitor side effects and take relevant action as soon as possible.

Connect With Others Who Understand

Long-term side effects of leukemia treatment can take a toll on one’s emotional, physical, and mental well-being, so it helps to have extra support. MyLeukemiaTeam is the social network for people with leukemia and their loved ones. On MyLeukemiaTeam, members come together to ask questions, give advice, and share their stories with others who understand life with leukemia.

Do you have late side effects from leukemia treatment? Share your experiences in the comments below, or start a conversation by posting on MyLeukemiaTeam.