Remission should lift the burden of cancer, but the effects that follow treatment may keep many cancer survivors from being able to sleep at night.
By the time she received her double mastectomy, Tracy Worrell was thrilled. Finally having the surgery meant that Worrell was now well enough for doctors to remove her breasts and several lymph nodes to prevent a recurrence. It was a landmark step in her journey with stage 4 triple-negative breast cancer that had metastasized to her liver and lymph nodes. Following chemotherapy, she experienced a complete pathological response (disappearance of all cancer signs), and scans showed her liver metastasis had disappeared. And once the breast and lymph node surgery was finished and the radiation therapy was over, Worrell felt she’d been given a gift, since not many patients are in a position to have metastatic lesions resected and be left with no evidence of remaining cancer.
“I was probably the most excited human on Earth to have my double mastectomy,” says Worrell, of Mullica Hill, New Jersey. “I just knew it was one more chance to keep me here longer. To give me more time, and that’s what I want — more time.”
But surviving came with a cost she didn’t expect.
“It just takes me an extremely long time to fall asleep,” Worrell says. “And once I do fall asleep, I wake up a bunch.” In the six months she’s been in remission, Worrell often lies awake at night while her husband lies next to her and falls asleep immediately. She’s tried listening to relaxing music, taking melatonin, avoiding electronics before bed, reading and even just lying in the dark hoping sleep would come. Still, her problems persisted. She frequently gets out of bed until she feels tired again, which usually takes at least an hour, then gets back in bed and starts the process over again.
“I’m done (with) my treatments and I’m in remission and I feel like mentally I’m in a good place,” says Worrell. “Why am I still not sleeping?” she asks herself.
Sleeping problems are common among cancer survivors and can persist for years after a patient enters remission. A study published in the journal Sleep Medicine found that more than half of long-term cancer survivors in a national sample reported experiencing “high sleep disturbance,” whereas 20% reported having poor quality sleep. By comparison, the Centers for Disease Control and Prevention estimates that in the general population, 26.3% of people
65 years or younger get less than seven hours of sleep each night. What’s more, 17% of survivors reported both sleep disturbances and poor sleep quality. One striking aspect of the study was the sheer length of time involved: The patients who participated were all nine years into remission. And four major issues were found to be linked to sleep disturbances in the survivors: emotional distress, physical distress, fear of cancer coming back and economic distress.
“There are 12 million cancer survivors in the United States, approximately. This is a big topic that hits a wide audience — not only the patients, but also their families,” says Dr. Erev Tubb, the oncologist who treated Worrell and medical director of the cancer center at Inspira Medical Center Mullica Hill. “It can be a major problem because sleep is very important.”
“I’ve been in remission for six years now,” says Linda Youse, of Hainesport, New Jersey, who received a breast cancer diagnosis in 2013. “And I believe I’ve been struggling the whole entire time. I can’t remember a time when I was having quality sleep since I’ve had my cancer.”
Like Worrell, Youse hoped life would return to normal after a lumpectomy and the resection of several lymph nodes.
“My surprise was that I never got back to normal, and sleeping has been an issue the entire time,” she says.
Naming one specific cause of these sleep disturbances can be very difficult, Tubb says, because there are many contributing factors. Frequently, sleep problems begin when a patient initially receives a diagnosis and is struggling with anxiety related not just to the possibility of death but also intensive therapies and major surgery. Worrell, however, understood why she wasn’t falling asleep in the weeks following her diagnosis.
“I knew it was just my brain racing,” she mentions. “After chemo, I definitely started having more and more sleep issues.”
“Sleep is really multifactorial. There are physical aspects, and there are emotional aspects,” notes Dr. Ana Maria Lopez, professor and vice chair of medical oncology at Sidney Kimmel Medical College, Thomas Jefferson University in Philadelphia, and chief of cancer services at Sidney Kimmel Cancer Center in Washington Township, New Jersey.
Tubb and Lopez point out that cancer is a psychologically traumatic experience, which plays a role.
“It’s a hard diagnosis,” Lopez says. “And it can’t help but bring up for people the risk of death, risk of disability, of life not quite being the same. Sleep is when people feel comfortable, feel like they can relax, feel like they can be free and rest. If people have gone through something traumatic, it can make it much more difficult to relax and allow the sleep process to happen.”
So do medications like steroids, hormone-manipulating medicines and immunotherapies, which can have both short and long-term consequences. Hormonal treatments can cause hot flashes that bother people as they lie in bed at night, and chemotherapy and immunotherapy drugs, besides having immediate side effects like nausea, can cause nerve damage, known as neuropathy in the oncology field.
Neuropathy can often manifest itself as feelings of numbness, tingling, weakened grip strength and instability while walking. But it can also compound preexisting sleep problems, like obstructive sleep apnea, Lopez notes.
“Often, the nerve symptoms may be noticed more at bedtime. When a person is quiet, trying to get to sleep, those symptoms become bothersome and impede sleep.” Furthermore, she adds, “neuropathy can be painful.”
Eric Zhou, a staff psychologist at Dana-Farber Cancer Institute in Boston, says that rather than any single cause, patients and survivors of cancer have a “myriad” of things that keep them up at night. And in many people, the trials of cancer diagnosis and treatment may exacerbate preexisting issues.
“They might have historically carried a greater disposition for poor sleep, and the cancer diagnosis and subsequent treatment push them over the edge,” he says.
People who have cancer are also prone to depression, one symptom of which is trouble sleeping, Zhou adds. This can cause a vicious cycle because lack of sleep can contribute to depression.
What Can Happen?
With these sleep problems come other issues, including fatigue, nausea and long-term effects that not only affect a patient’s quality of life but can also cause serious health conditions. A 2020 study found that poor sleep quality was associated with greater disability and worse overall quality of life in people who survived breast cancer. Survivors can also suffer from a reduced capacity for carrying out basic routine tasks and struggling with fatigue at work.
“The short-term side effects are just not feeling well,” says Tubb. “Then there are other side effects that are more long-term and insidious.”
These include high blood pressure and its associated side effects, like headaches or vision damage. People deprived of sleep can also become emotionally labile, getting into arguments and interpersonal problems because they are more irritable, and their moods are less stable.
Cognitive impairments are another problem. The Harvard Medical School’s Division of Sleep Medicine says that a lack of high-quality sleep can cause problems with focusing and paying attention, leading to problems with retaining new information. Poor sleep can also negatively impact mood, Harvard experts say, which can in turn impede learning.
“Sometimes when I want to get out or I have a plan or something, I don’t know that I’m alert enough to even be driving,” says Youse.
Lopez emphasizes the importance of sleep for general well-being and for recovery from sickness or injuries. “Restorative sleep is very important — important for healing, important for mental health and important for how we think,” she says. Recently she saw a patient who had a hard time sleeping the night before.
“As we were talking, it just became very clear that she was not really able to process what we were talking about because she was just so tired. Lack of sleep can impact our healing, our processing of new information and just our overall sense of well-being,” she says.
There are a few options for survivors with sleep issues, including prescription sleep medications, cognitive behavioral therapy and physical activity. Anyone who feels that their sleep is an important issue in their life should seek a formal evaluation from a sleep center or expert.
More than a quarter of respondents in the Sleep Medicine study reported taking sleep aid medications, but these medications are not good long-term solutions and do not necessarily address the underlying problems that keep people from sleeping, and many patients are reluctant to use a pharmaceutical sleep aid.
“I don’t think anyone thinks that’s a solution,” says Lopez.
Furthermore, patients can be reluctant to use sleep aids. Both Worrell and Youse say they would prefer to avoid these drugs.
Although medical cannabis and CBD products are often marketed and used as sleep aids, Lopez and other professionals point out that cannabis products are still a pharmaceutical intervention, and say that working on sleep hygiene or trying to develop healthy sleep habits through therapy is better, especially until researchers more thoroughly explore cannabis and CBD as therapeutic options.
“We want to support studying them,” Lopez says.
Although physical activity is generally recommended to all cancer survivors for both general health and sleep, it is important to remember that exercise is generally indicated for improving the quality of a patient’s sleep rather than improving the amount of sleep a patient gets at night. Study results released at the 2021 American Society of Clinical Oncology Annual Meeting indicated that yoga and cognitive behavioral therapy were both associated with improved sleep duration and “sleep efficiency” among cancer survivors.
Christina Dieli-Conwright of the Dana-Farber Cancer Institute and an associate professor of medicine at Harvard Medical School points out that cancer treatment can lead people into physical inactivity and poor diet, both of which can be disruptive to sleep.
“From my perspective, it is important to focus on those lifestyle factors that are modifiable, as we would say, in order to help improve sleep,” she says.
Dieli-Conwright specializes in studying exercise as a planned, prescribed type of physical activity — as opposed to more general physical activity, which can refer to the act of moving around in general. Some of her work focuses on examining how exercise interventions affect sleep in cancer survivors. In one study, Dieli-Conwright and colleagues prescribed a 16-week program of mixed aerobic- and resistance-based exercises performed three times per week at “moderate to vigorous intensity.”
“Not to our surprise, because this aligns well with the literature out there in studies focused on individuals who do not have cancer, we found that exercise quite profoundly impacted and improved sleep quality,” Dieli- Conwright says. “Individuals who were previously characterized as poor sleepers ... that percentage of individuals was reduced.” Various measurements, such as sleep duration and quality, increased, whereas the use of sleep medications decreased, she adds.
For now, Worrell is pinning her hopes on an intervention similar to those described in recent literature. She will soon begin a type of therapy she describes as “cognitive physical therapy,” an intervention designed to help with the cognitive effects often called chemo brain that she hopes will also help her get back on a healthy sleeping schedule.
“For me it’s part of the compromise of getting to live,” she says. “I’m willing to do it because I want to be here.” She hopes the therapy will alleviate some of the frustration she’s felt over the past few months.
“I’m tired of being tired,” she concludes. “I just want my energy back.”
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