Kathy LaTour is a breast cancer survivor, author of The Breast Cancer Companion and co-founder of CURE magazine. While cancer did not take her life, she has given it willingly to educate, empower and enlighten the newly diagnosed and those who care for them.
Following a few simple rules helps survivors get some sleep.
In the middle of another sleepless night after finishing treatment for breast cancer, 39-year-old Kathi Dubuque was chatting online with other survivors when she asked, “Has anyone else noticed it’s the middle of the night, and we’re all awake?”
Go online to cancer message boards addressing sleep issues and you’ll find messages of frustration and fatigue—often posted in the middle of the night. In the case of one friend, the answer to an e-mail about solving sleep issues after cancer treatment said it all: “I haven’t slept in seven years,” she wrote. “If you figure it out, let me know.”
American Cancer Society research compiled on more than 15,000 patients found that sleep difficulties rank as one of the top five problems that follow survivors after treatment ends. This isn’t news to many survivors who finish treatment and look forward to getting back to a good night’s sleep only to spend months or years trying to regain that blissful state.
The good news is that researchers have begun focusing on the problem, finding that there is a promising option in cognitive behavioral therapy (CBT), a therapeutic approach that works to change thoughts and behaviors, on specific causes of a very complex and multifaceted situation.
Julie Otte, PhD, RN, assistant professor at the Indiana University School of Nursing, says a challenge in resolving sleep issues for breast cancer patients whom she has studied begins with understanding the multidimensional aspects of a good night’s sleep, which has both physiological and psychological components.
Otte, whose study on sleep-wake disturbance in breast cancer survivors is scheduled to appear in an upcoming issue of the Journal of Pain and Symptom Management, studied 246 women who were an average of five and a half years past the end of their cancer treatment. She compared them to the same number of women who did not have breast cancer and confirmed what other researchers have also found: Breast cancer survivors have “significantly more prevalent sleep-wake disturbances compared to women without breast cancer,” Otte says.
The reasons for disrupted sleep, she says, can vary, such as physical issues related to discomfort from surgery, or hot flashes resulting from menopausal symptoms; psychological distress, such as intrusive thoughts, depression, and anxiety; poor sleep behaviors; or bad sleep environments. Another cause may be disruption of the body’s circadian rhythms, the 24-hour biological clock that controls a variety of systems, such as hormone levels and core body temperature. These issues can manifest as the inability to fall asleep or stay asleep, lack of deep sleep that provides rest, and excessive sleepiness during the day.
Has anyone else noticed it’s the middle of the night, and we’re all awake?
Ann Berger, PhD, RN, professor of nursing at the University of Nebraska Medical Center College of Nursing, says the good news about resolving sleep disturbances comes from recent solid research that says CBT works. In fact, CBT now sits in the coveted “likely to be effective” category on the Putting Evidence into Practice (PEP) card for sleep-wake disturbances.
PEP, a project of the Oncology Nursing Society, provides oncology nurses with research-based options for counseling their patients on a number of issues. Sleep disturbances were among the first four issues offered by PEP in 2006, when the cards were created. The cards, which were updated in 2008, list options under the categories “recommended for practice,” “likely to be effective,” “benefits balanced with harms,” “effectiveness not established,” “effectiveness unlikely,” and “not recommended for practice.”
There are no options listed in the “recommended for practice” category of PEP for sleep disturbances, which requires strong evidence of effectiveness from rigorously conducted studies, meta-analyses, or systematic reviews, and data showing the harms are small compared with the benefits. CBT has surpassed pharmacologic and herbal options, which are found in the “benefits balanced with harms” category. Berger says this doesn’t mean there aren’t times when pharmaceutical intervention isn’t warranted.
Berger’s research explored the use of a multi-component behavioral therapy sleep intervention versus a control group in women who were receiving breast cancer treatment after surgery. What she found was an improvement in overall sleep quality among the behavioral therapy group compared to the control group.
For Lorraine Chase of Poway, California, being diagnosed at age 65 with stage 3B breast cancer in 2005 was a shock that she says she didn’t handle well. Before cancer, Chase had no problems sleeping, adding that her husband even teased her that she was asleep before her head hit the pillow. Cancer changed that.
“I was so scared from the beginning,” Chase says. “I knew nothing about cancer. I had no clue. It just came out of the blue, and almost right away I was so anxious that I was just exhausted all the time.” Her anxiety wasn’t helped by the fact that she had side effects from preoperative hormonal therapy.
It wasn’t just lack of hormones like I thought, it was my habits. My whole system was messed up. I had had a routine, and it was gone.
“I had always exercised. I went to the gym three days a week and did treadmill, bicycle, and weights. I played golf, and I walked the dogs. I was in good physical condition, and then I just stopped everything.”
Chase began walking again and gradually built back up her stamina. She also found it helped to join a support group where she could talk about her anxiety. After completing the program, she was getting a good night’s sleep again.
Ancoli-Israel says it takes work to complete the program, and, if it’s done right, sleep improves, but in some cases she will recommend medication when the patient doesn’t want to do the behavioral changes or the person is so sleepy during the day that they cannot begin to change their nighttime behavior.
Kathi Dubuque’s sleep issues peaked around a year after treatment when she began having migraine headaches and insomnia. She was sleeping with the aid of prescription medication, but a sleep study showed she was not entering the deep sleep needed for rest. She quit her job, sold her home in Charleston, South Carolina, and moved to Texas to live with her parents. Having lost her health benefits, she could no longer get her sleep medication, so she says she wasn’t sleeping at all. A physician recommended behavioral changes and the supplement melatonin. The combination worked. Today, Dubuque is back in Charleston and working full time.
“I am rested now, and I dream, and I don’t have to take naps during the day. It’s amazing what a good night’s sleep will do.”
“Perhaps there are physiological changes during cancer treatment, such as changes in core body tempera ture, that disrupt sleep patterns,” Otte says. “Or a woman has frequent disruptions in nighttime sleep by staying awake to take a pill that causes sleep disruptions. We are finding that the reasons can be very individualized.”
Finding the solution is also very individualized, Otte says, recommending that before trying any pharmacologic sleep aids or CBT, survivors should be evaluated by a health care provider to rule out physical sleep disorders, such as obstructive sleep apnea (caused by a blockage of the airway, usually when the soft tissue in the rear of the throat collapses and closes during sleep), restless leg syndrome, or periodic limb movement disorder.
“I had a long time when I was so tired I would sleep during the day, and then I couldn’t sleep at night,” she says. “I was tired all the time. After surgery and radiation, it got better, but I still wasn’t sleeping. Finally, my doctor referred me to the sleep center.”
Chase was referred to a research study on CBT for cancer survivors at the Sleep Medicine Center at the University of California, San Diego run by Sonia Ancoli-Israel, PhD, director of education for the UCSD Sleep Medicine Center, a professor of psychiatry at UCSD School of Medicine, and fellow of the American Academy of Sleep Medicine. Ancoli-Israel specializes in sleep disturbances, fatigue, and cognitive dysfunction as a result of chemotherapy in cancer patients.
At the center, Chase met with a counselor one-on-one who began working on a behavioral program. “I listened and learned. It wasn’t just lack of hormones like I thought, it was my habits. My whole system was messed up. I had had a routine, and it was gone.”
Chase says some of the program was hard, such as getting up at the same time every morning no matter what time she went to sleep and not going to bed until she was ready to sleep. No more reading or watching television in bed. She also had to get back into her exercise routine.