Managing Long-Term Side Effects After Cancer

This page is for people with side effects that last after cancer treatment. It covers common lasting and late effects, what can help, and when to call.

Treatment is hard on the body, and recovery takes time. Some side effects fade quickly once treatment ends. Others last weeks, months, or longer. Tiredness and nerve tingling are two common examples. This does not mean treatment failed. It is part of healing.

Fatigue is one of the most common. It is a deep tiredness that does not fully lift with rest, and it can carry on after treatment ends. Nerve problems are also common. Doctors call this peripheral neuropathy, and it causes tingling, numbness, burning, or pain, usually in the hands and feet. Some people notice memory or concentration changes, often called chemo brain. Sleep, mood, appetite, and weight can change too. Which effects you get, if any, depends on the treatment you had.

Some effects show up later, months or years after treatment. These are called late effects. Depending on your treatment, they can include bone thinning, heart or lung problems, hearing or eye changes, and thyroid or other hormone changes. They can also include lymphedema (swelling when lymph fluid does not drain as it should), and a small risk of a second cancer. Your team can tell you which ones apply to you.

The cumulative (total) dose of anthracyclines, a group of chemotherapy drugs, sets your heart checks. Radiation fields and doses set which organs need watching. They also set which screening starts early. Cisplatin or carboplatin changes hearing and kidney follow-up. If nodes were taken out, that changes lymphedema risk in that limb for life.

So a detailed written treatment summary is the most useful paper a survivor can hold. "Chemotherapy in 2019" tells a new doctor nothing. Drug names, cumulative doses, dates, fields and surgical details tell them what to look for in 2045. If you do not have one, ask the treating center for it. Records get harder to find as time passes and departments move around.

Gentle, regular activity such as walking can ease fatigue and lift mood. Good sleep habits, pacing your days, drinking enough fluid, and eating well all help recovery. For neuropathy, memory changes, or lasting fatigue, your care team can suggest strategies, treatments, or a referral. Physical and occupational therapists can help with strength, balance, and daily tasks.

Neuropathy also raises the risk of falls and burns, because you may not feel the floor, a hot pan, or hot water properly. To stay safe:

• Check your hands and feet daily for cuts or sores.
• Wear shoes indoors and out.
• Clear loose rugs, and use rails and grab bars.
• Ask someone else to check the water temperature before you bathe or shower.
• Use oven mitts and take care with sharp objects in the kitchen.

Ask your team before starting a new medicine or supplement for neuropathy.

Tell your team about side effects that persist or bother you. Many can be improved, and some lasting symptoms are worth checking to rule out other causes. You do not have to simply put up with them.

Follow-up clinics are built around spotting a return of the cancer. So the questions are about scans. They are not about whether you can climb stairs. That leaves lasting effects unsaid. Fatigue, thinking problems and sex problems suffer most. People assume they are not medical enough to mention.

A short written list works better than a vague account of being tired. Name the symptom. Say how long it has been there. Say what it stops you doing. "I cannot manage a full day at work and I sleep from six" gets a different response than "I get tired."

Referral routes exist for most of these. They are often there but not offered unless you ask. Ask about these services.

• Cardio-oncology, for the heart.
• Lymphedema services.
• Audiology, for hearing.
• Physical therapy and occupational therapy.
• Pelvic health physical therapy.
• Endocrinology, for hormones.
• Neurology, for nerves.
• Pain services.
• Sexual health and fertility services.
• Neuropsychology, for changes in thinking.

For fatigue, the most consistent evidence is for supervised exercise that combines aerobic and resistance training, and major oncology bodies back it. Ask your care team what is safe for you. It is also worth checking for causes that can be treated on their own:

• Anemia
• Thyroid problems
• Low vitamin D or B12
• Sleep apnea
• Depression
• Pain that is not controlled
• Drugs that make you sleepy

• Call 911 or go to an emergency department if you have chest pain, sudden shortness of breath, fainting, or sudden weakness or numbness on one side of the body. Do not drive yourself.
• While treatment is still running, the fever line is stricter. CDC treats a fever during chemotherapy as a medical emergency. CDC says to call your doctor right away at 100.4°F (38°C) or higher, day or night. If you cannot reach your team, go to an emergency department and tell staff you are on chemotherapy.
• Call your care team right away if you have a temperature of 100.4°F (38°C) or higher or shaking chills, even if treatment has finished.
• Call your care team the same day if you have new or fast-spreading numbness or weakness; trouble buttoning clothes, holding objects, or walking steadily; or a cut, blister, or burn on a numb hand or foot that looks red, swollen, or infected.
• Call your care team within a day or two if fatigue suddenly gets much worse, an arm or leg becomes swollen or feels tight, you have new shortness of breath on stairs, or memory or mood problems are getting worse instead of better.

• National Cancer Institute — Coping: Late Effects
• National Cancer Institute — Nerve Problems (Peripheral Neuropathy) and Cancer Treatment
• National Cancer Institute — Fatigue and Cancer Treatment
• Exercise Guidelines for Cancer Survivors: international multidisciplinary roundtable consensus (PubMed)