More than just tired: Cancer-related insomnia & fatigue

Beverly Phelps, 50, from Metairie, Louisiana, says she usually gets just 2-3 hours of sleep a night. She was diagnosed with triple-negative early-stage breast cancer twice, in 2012 and 2015.

Beverly felt like she was the only person in the world experiencing insomnia, trouble falling or staying asleep; and fatigue, extreme tiredness and lack of energy that makes it hard to function, even when you’re getting a lot of sleep. Then she started talking to other people with breast cancer and realized she was not alone.

About half of people in treatment for cancer experience insomnia, and almost all feel fatigued at least some of the time, says oncology advanced practice nurse Evelyn Robles-Rodriguez, RN, MSN, APN, AOCN. Even after early-stage cancer treatment is done, she says, more than 80 percent of people may experience fatigue related to treatment. And for those with metastatic breast cancer, continuous treatment can mean continuous fatigue.

What’s the cause?

Breast cancer itself puts stress on your body that can cause insomnia and fatigue. So do treatments such as surgery, radiation, chemotherapy and targeted therapy. Hormonal therapy has a reputation for causing extreme tiredness. The menopausal symptoms it can cause, like hot flashes, can make it hard to fall or stay asleep, Ms. Robles-Rodriguez says. Chemotherapy that throws young women into menopause can have the same effects.

Sharon Borrelli, 62, from Weymouth, Massachusetts, was diagnosed with early-stage breast cancer in 1997 and metastatic breast cancer in 2012. She stopped working about 6 months after the metastatic diagnosis, partly because of fatigue. Then whole-brain radiation therapy made it worse.

“[The fatigue]’s very powerful and it affects my life on a daily basis,” Sharon says.

She tries to schedule any appointments between 11 a.m. and 2 p.m. so she can sleep late in the morning and nap in the afternoon. Still, by 8 p.m. she’s ready for bed. But she usually doesn’t sleep through the night. Sometimes, after not sleeping well for days, she’ll sleep for 12-18 hours.

Pain keeps many people with cancer from falling asleep, or wakes them in the middle of the night. The emotional toll of cancer can also cause insomnia and fatigue by sending your thoughts racing at night and sapping your energy during the day. Fear of recurrence often keeps Beverly from sleeping.

“I have anxiety because once they tell you you have cancer, you’re afraid you’ll get it again,” she says.

Treating insomnia and fatigue

In early-stage breast cancer it’s unusual to change treatment because of fatigue, Ms. Robles-Rodriguez says. But if it’s caused by severe anemia, a lower than average number of oxygen-carrying red blood cells in the body that can worsen fatigue, your doctor may recommend decreasing your dose of chemotherapy.

In metastatic disease, though, it’s more common to change treatment if it’s causing severe anemia that could lead to blood transfusions becoming necessary. Providers want to make sure you can maintain your lifestyle as much as you can, and more importantly, have good quality of life, Ms. Robles-Rodriguez says.

Whether changing treatment is an option or not, “it is really important for patients to discuss these things with their providers. Patients may not realize there are tips and therapies that may help them cope with these problems,” Ms. Robles-Rodriguez says. And sometimes providers are so focused on treating the cancer itself, they do not ask about side effects like insomnia and fatigue that are not considered life threatening.

Here are some suggestions for treating cancer-related insomnia and fatigue:

Exercise

Though it seems to go against common sense, studies show regular exercise is the best treatment for insomnia and fatigue, Ms. Robles-Rodriguez says. Continuing physical activity you did before your diagnosis during treatment may stop severe insomnia or fatigue from developing in the first place. Even if you weren’t active before your diagnosis, starting now, under the guidance of your healthcare providers, can help.

Ms. Robles-Rodriguez encourages everyone to get moving, even if you start with just walking to the mailbox and back. Exercise is just as important for people with metastatic disease as it is for those with early-stage disease.

“As long as the patient is physically able to maintain an activity, you want them to do that,” she says.

Complementary therapies like yoga, meditation, guided imagery and tai chi can also prevent insomnia and fatigue. Sharon does yoga and, when she can afford it, gets acupuncture. Sometimes these activities help her fall and stay asleep, she says.

Diet

Caffeine is a stimulant, and having it in food and drinks like coffee, tea and energy drinks in the afternoon or evening can make it hard to sleep. It’s also a diuretic, which means it may make you need to use the bathroom during the night. To prevent those bathroom trips, you should also avoid other fluids close to bedtime (though if a little milk or tea helps you fall asleep, that’s OK). Alcohol may make you sleepy, but it can also hurt your sleep quality and make you wake up early. Avoid big meals close to bedtime: They can cause heartburn, making it hard to sleep.

There is conflicting research on whether supplements, like melatonin, can safely help people with cancer sleep better. Talk to your doctors before taking any supplements. Some could cause your cancer treatment to work less well.

Sleep hygiene

Lifestyle choices that make it easier to fall asleep, stay asleep, and wake up rested are called “sleep hygiene.”

Ms. Robles-Rodriguez says the bedroom should be used only for sleeping and sex. All other activities should happen elsewhere. Many people use electronics near bedtime or when they wake up in the middle of the night, but that can make it harder to sleep.

“The more you wake yourself up by becoming active during that night cycle, the more your body is going to get out of rhythm” and expect to read, eat or watch TV in the middle of the night, she says. “I tell my clients, ‘You don’t need to have that phone next to you at all times. Leave your phone away from you where it won’t disturb your sleep,’” or turn it off.

If you wake up too early, she recommends keeping your eyes closed and meditating until you fall back to sleep. If that doesn’t work, many sleep specialists suggest getting up, leaving your bedroom and doing something relaxing until you feel sleepy again.

Prescription sleep aids

It’s best to use prescription sleep aids only after you have tried everything else, Ms. Robles-Rodriguez says. That’s because some prescription sleep medicines haven’t been studied well in people who have cancer, and could make cancer treatment work less well. They can also be addictive, making them an especially bad option for someone like Sharon, who has experienced addiction in the past.

“I don’t want to start taking [prescription medicines] for sleeping … unless I’m really desperate,” she says.

Talking about fatigue with others

Insomnia and fatigue can affect your relationships. It can make you irritable and more likely to snap at your loved ones, Ms. Robles-Rodriguez says. It can also keep you from doing things you enjoy with people you care about, and from working or doing chores.

Everyone knows what it’s like to feel tired. But people who have not had cancer or another serious illness may not understand how extreme your tiredness can be. Sharon says she must often remind loved ones that cancer means she doesn’t always have energy to make plans.

“Sometimes people don’t understand, because the fatigue that you can have with cancer may not be the same kind of fatigue like ‘I worked hard all day and now I feel tired,’” Ms. Robles-Rodriguez says. Open communication is important to helping loved ones, co-workers and others better understand you aren’t ignoring them or slacking off — that you’d like to do more, but simply can’t.

Ask loved ones along for activities that can lessen fatigue, like walking or yoga. Ms. Robles-Rodriguez also says taking a loved one with you to an appointment so they can hear from a doctor that fatigue is a real and serious symptom or side effect of cancer and its treatments can help them better understand what you’re going through.