Plan For Side Effects That May Appear After Active Treatment Ends

The side effects that occur from treatment often disappear as your body heals. However, depending on the therapies in your treatment plan, you may experience long-term side effects or medical conditions that develop months or years after treatment ends. These are known as late effects.

Late effects can vary widely from person to person based on many factors, such as your age, gender and overall health status. How you are affected may also depend on the type of treatment you had, the specific drug and dosage, and the length of time it was given. Chemotherapy, hormone therapy, immunotherapy and targeted therapy are systemic therapies, which means the drugs travel in the bloodstream through the entire body. Late effects resulting from these treatments are determined by the particular drug and how the body reacts to it. Late effects from surgery and radiation therapy typically involve only the areas of the body that were treated.

Some late effects disappear over time, while others may be permanent. Some can even develop without warning years later. Because they can be so hard to predict, being aware of them is a good course of action.

Ask your doctor or nurse navigator about late effects to watch for, including major health conditions that may be associated with the specific treatments you received or are receiving currently. Most late effects can be treated more easily and with a better outcome if they’re detected early. That’s why it’s so important to stick to the appointment schedule recommended in your survivorship care plan and to contact your doctor between appointments with any new health concerns.

Immune-related adverse events (irAEs) are not common but can occur with certain types of immunotherapy, so tell all medical professionals you see from now on that you’ve received immunotherapy. Ask your doctor if you are at risk, how to identify the symptoms and when to seek emergency care (see Table 1). Some irAEs can develop rapidly, becoming severe and even life-threatening without immediate medical attention. Report symptoms immediately if they occur. The side effects may be easily corrected if they are treated rapidly.

Making and keeping all medical appointments on schedule is very important because routine laboratory tests and imaging may detect an irAE in its early stages before you can feel symptoms. Contact your health care team if symptoms arise between appointments. Many of these treatments are relatively new, so the long-term effects are not yet well known. Remain alert to the possibility of irAEs for up to two years after completing immunotherapy.

Table 1. Immune-Related Adverse Events (irAEs)

Body System irAE Symptoms and Signs
Cardiovascular Myocarditis Chest pain, shortness of breath, leg swelling, rapid heartbeat, changes in EKG reading, impaired heart pumping function
Endocrine Endocrinopathies Hyperthyroidism, hypothyroidism, diabetes, extreme fatigue, persistent or unusual headaches, visual changes, alteration in mood, changes in menstrual cycle
Gastrointestinal Colitis Diarrhea with or without bleeding, abdominal pain or cramping, bowel perforation
Liver Hepatitis Yellow/orange-colored skin or eyes (jaundice), nausea, abdominal pain, fatigue, fever, poor appetite
Nervous system Neuropathies Numbness, tingling, pain, a burning sensation or loss of feeling in the hands or feet, sensory overload, sensory deprivation
Neurologic Encephalitis Confusion, hallucinations, seizures, changes in mood or behavior, neck stiffness, extreme sensitivity to light
Pulmonary/lung Pneumonitis Chest pain, shortness of breath, unexplained cough or fever
Renal/kidneys Nephritis Decreased urine output, blood in urine, swollen ankles, loss of appetite
Skin Dermatitis Rash, skin changes, itching, blisters, painful sores

Late effects can differ by treatment type. Following are some of the most common.

Bone loss can be caused by many types of therapies as well as the cancer itself. These treatments can cause loss of bone mass and density, making bones thinner, brittle and porous. Bone loss also occurs when cancer has spread to the bone (metastasis). Your doctor can measure bone loss by comparing your current bone density scans with those taken during treatment. Medication or external-beam radiation therapy may be recommended to help relieve symptoms.

Cognitive dysfunction (chemo brain) occurs when cancer survivors can’t think clearly or have trouble processing information, remembering names and dates, finding the right word, concentrating or organizing their thoughts or tasks. It is common to have these types of cognitive issues long after treatment ends, sometimes for years. Be patient with yourself, and consider talking with other survivors for insight and support. And though it is nicknamed “chemo brain,” individuals who did not have chemotherapy as part of their cancer treatment also report these symptoms. It can result from other types of cancer treatment or from stress.

Fatigue, or feeling physically exhausted, can continue long beyond the end of treatment. It occurs primarily because the body needs extra energy to repair healthy tissues damaged by cancer therapies. Different from the fatigue that healthy individuals feel, it lasts longer, is more severe and may be unrelieved by sleep. Talk to your doctor if it is persistent enough to interfere with your day-to-day activities.

Heart disease and related conditions can be worsened by various cancer treatments. You are especially vulnerable if you had heart or vascular conditions before you began treatment. Heart disease broadly refers to coronary artery disease, congestive heart failure, arrhythmia (irregular heart rhythm) and heart attack. Related conditions include high blood pressure, stroke and blood clots. It’s important to talk to your doctor to help determine your level of increased risk based on the types of therapy, specific drugs and dosages you received, and for how long. You may be referred to a cardiologist for additional long-term monitoring. You can help reduce your increased risk of heart disease by following the recommended nutrition guidelines for cancer survivors, including limiting how much red meat and processed food you eat. A great way to start is to try going meatless a few days a week and incorporate other healthy protein sources into your meals.

Infertility can arise when cancer or its treatments damage any part of the endocrine system, including the adrenal glands, thyroid, ovaries, testes or the area of the brain that controls the endocrine system. Infertility may be temporary (months or even years) or permanent. Because chemotherapy and radiation therapy are known to damage reproductive cells, people who have these treatments are at greater risk. Typically, the higher the treatment dose and longer the duration, the longer the period of infertility. Talk with your doctor or ask for a referral to a fertility specialist for more information.

Lymphedema may occur when lymph nodes are surgically removed or damaged during surgery or by radiation therapy, infection or the cancer itself. Lymph fluid can build up and cause swelling in that area, extending to the arms, legs, face, neck, abdomen or genitals. The affected part of your body may feel tight or hard, or you may notice tingling, discomfort and less flexibility. Contact your health care team at the first sign of swelling, and keep the swollen limb elevated whenever possible. Your doctor may recommend wearing a compression garment that has been properly fitted by a certified lymphedema specialist.

Neuropathy is pain or discomfort resulting from damage to the peripheral nervous system, which controls movement and feeling in the arms and legs. Symptoms include numbness, pain, burning, tingling or loss of feeling that often begins in the hands or feet. Many types of cancer treatment can cause neuropathy. Discuss your symptoms with your doctor, who may prescribe pain medication, steroids, numbing creams or lotions to help provide relief.

Neutropenia (low white blood cell count) can be caused by chemotherapy. It puts the body at higher risk for developing an infection. If your treatment plan included chemotherapy, your doctor will likely schedule regular blood tests to monitor for it. If a high fever accompanies the condition or if your white blood cell count is extremely low, your doctor may prescribe treatment to stimulate your bone marrow to produce more white blood cells.

Pain can be caused by several types of cancer treatment. It typically lessens as your body heals and recovers. Pain can also result from other side effects of cancer and its treatments, including neuropathy, nerve damage, osteoporosis, lymphedema, bone metastasis, hormone imbalance or loss of motion. Untreated pain, even if minor, can escalate quickly and get out of hand. Many pain management options are available, so contact your doctor at the first sign of pain. Provide as many details as you can, such as when pain occurs, how long it lasts and what triggers it.

Sexuality issues can develop as a result of the cancer and its treatment, which can affect how you feel about your body and how you relate intimately to your partner. Your sexual health contributes to your quality of life, so even if you feel awkward, talk to your doctor about any sexual difficulties you’re experiencing.

Treatment Type Late Effect
Chemotherapy Bone loss, cognitive problems, constipation, diarrhea, fatigue, fever, infertility, neuropathy, neutropenia
Hormone therapy Blood clots, bone loss, hot flashes, menopausal issues, sexual health issues
Immunotherapy Cognitive problems, fatigue, fever, irAEs*, skin reactions
Radiation therapy Bone loss, cognitive problems, fatigue, infertility, lymphedema, skin reactions
Surgery Cognitive problems, fatigue, infertility, lymphedema, pain, sexual health issues
Targeted therapy Constipation, cough, diarrhea, fatigue, headache, shortness of breathe or trouble breathing, skin reactions.

Explore The Benefits of Rehab During Survivorship

Rehabilitation care, often referred to as rehab, helps cancer survivors improve their physical strength, function and movement, which increases their ability to care for themselves and assist in the management of pain and other symptoms. A cancer rehabilitation team is typically supervised by a physiatrist (a doctor who specializes in rehabilitation) and may include physical and occupational therapists, rehabilitation nurses, speech therapists, mental health professionals, lymphedema specialists, dietitians and others.

Although some level of rehabilitation services and treatment would benefit most survivors, very few are referred to rehabilitation. In recent years, however, more emphasis has been placed on making rehabilitation services more readily available.

Following are common challenges that may occur during survivorship. If you are having difficulties with any of these or other areas and are not receiving rehabilitation services, ask your doctor how a rehabilitation program may help:

  • Balance issues
  • Climbing stairs
  • Fatigue
  • Limited range of motion
  • Lymphedema
  • Memory or other cognitive difficulties
  • Mobility
  • Pain
  • Personal care, such as showering or getting dressed
  • Problems chewing food
  • Sexual health issues
  • Swallowing difficulty
  • Weakness