Taking Charge of Your Cancer Treatment

As a registered nurse, Jayne Word expected that treatment for her stage 3a breast cancer would be difficult and have many side effects. She had a mastectomy, six rounds of chemotherapy and 33 radiation treatments, and today she is cancer-free.

What she didn’t expect was frustratingly poor communication and very little follow-up education from her oncologist, which caused her to briefly discontinue the tamoxifen she had been prescribed to prevent recurrence.

“I stopped the tamoxifen for two days but felt so guilty knowing [what might happen] if I didn’t take it,” says Word, of Kalamazoo, Mich. “Obtaining my own information and seeing the statistics about the drug’s effectiveness is what kept me [adherent]. I came to accept that [taking the drug] is worth living much longer because of it.”

Word was smart—she quickly realized the potentially dangerous consequences of failing to comply with her drug regimen and restarted her tamoxifen as prescribed. But not all cancer patients are as determined. Every year, researchers report, an untold number stop taking their oral medications or take them only intermittently. Among breast cancer patients taking a hormone therapy, for example, a fourth to about half are nonadherent for the required five years.

Unfortunately, the rate of medication nonadherence among cancer patients is expected to increase as more oral therapies are approved for at-home use. According to a 2010 study published in Current Oncology Reports, an estimated 25 percent of cancer chemotherapies will be in oral formulation by 2013.

“Nonadherence is a growing problem,” says Carolyn Blasdel, a family nurse practitioner with the Knight Cancer Institute at Oregon Health and Science University in Portland. “The old paradigm for cancer treatment was a defined, time-limited process, and chemo was given in cycles intravenously. Now, there are many oral medications and the responsibility is completely on the patient to take them or not.”

Blasdel works primarily with patients who have chronic myeloid leukemia (CML), for which oral tyrosine kinase inhibitors (TKIs), such as Gleevec (imatinib) and Tasigna (nilotinib), are often the treatment of choice. She cites a 2009 study published in the journal Blood, which concluded that up to a third of the patients in the study taking TKIs could be considered nonadherent, with only 14 percent completely adherent. Another study of CML patients, published in the Journal of Clinical Oncology, found that drug adherence tends to decline the longer a treatment progresses.

Nonadherence is a growing problem. Now there are many oral medications and the responsibility is completely on the patient to take them or not.

So why would patients stop taking medications that could save their lives?

“One of the most common reasons in oncology is side effects,” says Ann Partridge, an associate professor of medicine at Harvard Medical School and director of the adult survivorship program at the Dana-Farber Cancer Institute in Boston. “Patients taking a chronic drug to prevent recurrence often don’t feel the gains immediately, and if they have burdensome side effects, they may stop taking it or taking it consistently.”

Other reasons for nonadherence include:

Cost. Many oral cancer treatments cost more than some patients can afford, even with insurance, due to high co-pays.

Forgetfulness. If a patient doesn’t already take a medication every day, remembering to do so can be difficult. “Any kind of behavioral change like that is challenging,” Partridge says.

Anxiety. Some patients worry that the drug isn’t working or won’t actually help.

Denial. “I have patients who say, ‘I don’t like taking drugs because it reminds me of my cancer, so I choose not to,’” Partridge says. “Sometimes they feel it’s not emotionally worth it.”

Illiteracy. Some patients may have difficulty reading labels or understanding dosing directions.

Complexity. Some regimens require multiple drugs to be taken at very specific intervals and with or without food.

A secondary issue, Partridge says, is whether patients who may be considered adherent are taking their medications correctly: in the right dose, at the right time and with or without food. All of these factors can change the way a drug is absorbed and how effective it is, Partridge says. “For example, taking a little bit extra may result in significant side effects, including toxicity; while taking half a dose [to make a drug last longer] may be worse than not taking the drug at all.”

“Cancer has a notorious way of becoming resistant to treatment if blood levels of chemotherapy are inadequate,” Blasdel says, “so taking a medication incorrectly can affect a patient’s ability to stay in remission. Once you relapse with CML, for example, it can become very difficult to treat.”

There are a variety of ways to improve adherence among cancer patients, Partridge and Blasdel agree.

Both emphasize the value of open, judgment-free communication between the patient, family, caregivers and treatment team.

“I believe the biggest risk to a patient is not communicating properly with his or her doctor about concerns or difficulties, and the doctor not asking,” Partridge says. “If there are problems, sometimes they can be fixed.”

In many cases, additional solutions may be necessary. If a patient is nonadherent because of difficult side effects, for example, other drugs may be prescribed to control those effects. If money is an issue, the patient’s treatment team may be able to find a drug assistance program or prescribe a less expensive form of treatment.

Patients who have difficulty remembering to take their medications have a number of options available to them, including “reminder apps” (see sidebar) for smartphones and other devices. Pill containers—especially those that electronically remind the patient when to take a medication—might also boost adherence.

Ultimately it’s the patients’ choice ... But I feel it’s my job as a provider to make sure they are making a well-informed decision on whether to take the pill or not.

“Often helpful to some people is having a partner or spouse remind them, as long as it doesn’t get into nagging,” Blasdel says. “Berating someone is certainly not going to help.”

Improved education can also encourage patients to take their medications as prescribed by helping them understand what their drugs do and the consequences of nonadherence. “The amount of education patients receive can be variable,” Blasdel says. “And even more variable is the amount of information the patient can comprehend and absorb at one time. These people are scared and anxious, and anxiety cuts down on the ability to learn and remember.”

Because of this anxiety, drug education may need to wait until the patient has had sufficient time to come to terms with his or her diagnosis, Blasdel says. It’s also a good idea to bring a family member or friend to take notes and assist with questions.

Ideally, all patients being treated for cancer would take their medications as prescribed. But the reality is quite different: Some patients will be nonadherent despite the efforts of their family and treatment team.

“Ultimately, it’s the patients’ choice—they’re adults,” Partridge says. “But I feel it’s my job as a provider to make sure they are making a well-informed decision on whether to take the pill or not. I’ll work with them to help them if I think that’s the best thing for them.”

Word understands how some cancer patients can fall into nonadherence because she’s been there. Her advice to them is simple: Make sure you feel comfortable with your care provider and don’t hesitate to change providers if communication or education is lacking. “It’s also important that patients ask questions,” she adds. “Among them: What is this medicine for?, What side effects are expected and who do I call about them? and What are my risks if I choose not to take it?”