Understanding the Late Effects of Cancer and Its Treatment

More people are surviving cancer than ever before. In fact, millions of Americans with a history of cancer are alive today. Many of them were diagnosed many years ago. As more and more people survive longer, we are seeing new problems caused by cancer, its treatment, or both. These problems are called late effects and can happen months or years after treatment ends.

What causes late effects?

Healthcare providers are trying to figure out why people have late effects, who might be more at risk for getting them, and what can be done to prevent or manage them. Late effects may include physical problems, psychological effects, a second cancer, and other problems. Late effects can depend on:

• The type of cancer you had

• The age you were when you were diagnosed and treated

• The type of treatments you had

Having cancer does not mean that you'll have late effects. You should ask your healthcare team about your risk for late effects, what they might be, what you can do to help prevent them, and how to manage them if you do have them.

Physical problems

Physical problems can affect any part or function of the body. Some people develop problems with their bones, muscles, hearing, breathing, stomach, kidneys, bladder, blood, and bone marrow. Other people may have hormone problems. For example, children may have growth and puberty problems. Or adults may have premature menopause, infertility, or sexual problems. Some people have only one problem, while others may have more than one. It's not known why this happens to some people and not to others.

Here are a few treatments and the common late effects linked to them. Please remember that this list is not complete. Talk with your healthcare provider so you know what to watch for.

• Radiation. The late effects of radiation depend on what part of the body was treated and how much radiation was given. For instance, if your head was treated, possible late effects can include cataracts and dental problems. If your abdomen (belly) or pelvic area was treated, bowel or bladder problems could develop.

• Surgery. The late effects of surgery also depend on what part of the body was operated on and what was done. If you have lymph node surgery, you may develop swelling of the arm or leg (lymphedema). If you had abdominal surgery, scar tissue can sometimes cause bowel problems.

• Chemotherapy. Chemo late effects depend on the type and amount of medicines given. Some medicines can cause heart and lung damage. Others can affect nerves or cause memory problems.

Psychological problems

• Learning disabilities. Some cancers and their treatments can cause learning problems. These can affect how someone learns and remembers things. For instance, many people who are treated for brain tumors need cognitive rehabilitation to train them how to remember and learn things. Researchers are also studying a phenomenon called chemo brain. This happens when attention, memory, and other thinking functions are affected by chemotherapy.

• Emotional problems. Worrying about having tests or the cancer coming back is normal. But when the worry or fear takes over your life, you may need help. Depression and post-traumatic stress disorder (PTSD) are possible effects of cancer and its treatment. You may also be depressed because of problems caused by late effects. For instance, if your cancer or treatment caused you to be infertile or sterile, you may be depressed about your inability to have children.

Depression is a serious illness. If you are depressed, you may:

• Focus on the bad things

• Not enjoy life

• Feel that life isn't worth living

• Feel like you're a burden on others

• Feel like you don't deserve any help

• Not have energy

• Stay away from friends and family

Some cancer survivors develop PTSD. This means that they are having a hard time adjusting to having cancer or to surviving cancer. If you have PTSD, you may:

• Have dreams or flashbacks about your cancer or treatment

• Feel very scared, angry, or upset by certain sights, sounds, or smells

• Have sleep problems

• Have trouble thinking clearly

If you think that you have depression or PTSD, it's important to get help. Your healthcare team can suggest a counselor for you to talk to or give you medicines that can help.

Second cancers

Developing a second cancer is not common. But it can happen. You could get a second cancer from the treatment you got to cure your first cancer. Chemotherapy and radiation are two treatments that may cause a second cancer. Also, cancer runs in some families who may be more likely to get more than one cancer. If you do things that increase your cancer risk, like using tobacco, you could also get another cancer.

Ask your healthcare provider what cancers you might be at higher risk for and what you can do to either reduce your risk for them or find them early. In some cases, your healthcare provider may advise more frequent cancer screenings.

Resources

It's important to talk to your healthcare provider about late effects. Your provider can tell you which problems you could be at risk for, what you can do to help prevent them, and how to manage them if they occur. Remember that many cancer survivors don't develop any late effects. See your provider regularly for checkups. Ask if there are programs and support groups for cancer survivors and their families. And remember that if you feel worried or depressed or are having a hard time coping, you should talk to a mental health provider. This might be a licensed clinical social worker, a clinical psychologist, or a psychiatrist.

Living with cancer is hard. Sometimes surviving it can be hard, too. There is help.