Getting Some Sleep: New Strategies for Survivors

Sleep disorders are finally getting the attention they deserve.
It’s the middle of the night, and Heidi Floyd is once again answering email in the bathroom so she won’t wake her husband. Now five years out from her second round of breast cancer, Floyd struggles nightly to stay asleep.

“I think it’s a combination of things,” says the mother of four. “I used to sleep on my belly and now I can’t. And I have lymphedema and will wake up with my arm asleep.”

Oh, and don’t forget the hot flashes, she adds, calling them a side effect of the estrogen blocker she must take.

While it’s not hard to understand why an estimated 80 percent of those in treatment have sleep issues while coping with the stress of the unknown and drugs that disrupt the body in multiple ways, the idea that sleep challenges may continue into survivorship comes as a surprise and disappointment, Floyd says.

Julie Otte, PhD, RN, OCN, assistant professor at the Indiana University School of Nursing, says the number of survivors of breast cancer with sleep issues ranges from 60 to 90 percent, depending on the study and the research parameters.

“This is compared with 55 percent of those who have not had cancer,” she says. “The problem in studying sleep is how sleep is measured and how people conceptualize it.”

There are many subtypes of insomnia, Otte says. It could be the result of medication or hot flashes, but when sleeplessness continues over a long period, it becomes insomnia syndrome.

“We need to know exactly what wakes the women up to identify the underlying issue to see if it’s psychological or physiological,” Otte says.

Photo by Adrea Thomas Photography

Photo by Adrea Thomas Photography

Floyd, now living in Atlanta, says her first diagnosis in 2005 was a 10 on the stress meter and left her with insomnia. Diagnosed with stage 3B breast cancer and eight weeks pregnant with her son Noah, she didn’t have health insurance because her husband was a seminary student. The first oncologist she saw wanted her to terminate the pregnancy. She refused and found another oncologist who was willing to treat her and, as she says, her son, who is now a healthy 10-year-old.

Her recurrence in 2011 meant more surgery, more treatment and less sleep. When a tumor was discovered on the scar tissue of her first mastectomy, she asked for a bilateral mastectomy. They reluctantly agreed, and pathology revealed a small cancer in her “healthy” breast.

Her insomnia got worse with physical pain and lymphedema now part of the equation, not to mention the stress.

She says she never has trouble falling asleep, but after a hard sleep for an hour and a half, she is up every 45 minutes. She tried napping during the day, which didn’t help, and she doesn’t want to take medication.

The Importance of Sleep

Luckily, new attention is being paid to sleep as a survivor issue and one that may significantly affect quality of life as well as health. It is during sleep that the body repairs and restores vital functions, providing the down time the body needs to repair cells and tissues.

Talk about this article with other patients, caregivers, and advocates in the Breast Cancer CURE discussion group.
CURE wants to hear from you! We are inviting you to Share Your Story with the readers of CURE. Submit your personal experience with cancer by visiting Share Your Story
Not yet receiving CURE in your mailbox? Sign up to receive CURE Magazine by visiting
//For side ad protocol