Veering Off Course: Addressing Challenges in Chemotherapy and Radiation Adherence

Fear. Finances. Logistical obstacles. These are just some of the reasons health professionals hear to explain why their patients with cancer don’t adhere to their treatments. While the importance of following a treatment plan might seem obvious, some of the challenges patients face can make their commitment to that idea decidedly murkier.

Take Desiree Walker, for example.

Walker, 54, was diagnosed with breast cancer for the second time at age 47 (she was 38 at first diagnosis). After a bilateral mastectomy, Walker says, her oncologist recommended an infused chemotherapy regimen of carboplatin and docetaxel, along with a series of infused treatments of the targeted therapy Herceptin (trastuzumab) — plus the hormonal drug tamoxifen — to combat her aggressive HER2-positive cancer. Walker, an advocate for patients with cancer and a support group facilitator who travels to national and international conferences, knew how important it was to adhere to the treatment plan her oncologist had laid out for her. But then life happened.

Walker was laid off from her job prior to her second diagnosis. “As a cancer survivor, I knew how important insurance was. So I opted for COBRA,” she says.

She began chemotherapy and Herceptin treatments as scheduled, but then life happened again. She developed reduced heart function shortly after beginning Herceptin. Her oncologist said this was not unusual and stopped the targeted therapy until her cardiologist cleared her to resume and complete the treatment under close monitoring.

“I finished chemotherapy on time, but still had to finish the Herceptin,” Walker says. “What normally would have taken a year ended up taking a year and a half. During that time, I got a letter informing me that my COBRA was running out.”

She appealed to both her former employer and the insurance company, but was told there would be no exception. So she made the difficult choice to stop the Herceptin treatment for six weeks as she tried to work through her insurance issues. Her oncologist understood her struggles, but was uncomfortable with not following treatment protocol — particularly because Walker’s cancer was a recurrence.

“It was eye-opening for me. As informed as I was about many things, I wasn’t prepared for this experience,” Walker says. She ultimately reached out to an estranged family member, who assisted her with finishing her treatment.

Patients who don’t adhere to infused chemotherapy or radiation therapy treatments typically fall into a few categories. There are those who want and intend to adhere to treatment, but face practical challenges, such as a lack of transportation or child care, financial problems, or family or other issues that prevent them from doing so. But there are also patients who struggle with fear, or with feeling overwhelmed or hopeless. Finally, there are patients who don’t agree with the treatment plans their oncologists have outlined, don’t see the big-picture value of treatment or want to try alternative therapies.

PRACTICAL MATTERS

“It isn’t uncommon for issues of cost to get in the way of treatment,” says Victoria Puzo, M.S.W., L.M.S.W., a licensed oncology social worker and coordinator of online support group programs with the New York City-based patient support organization CancerCare. “Even with insurance, co-pays related to treatment can affect whether somebody adheres.”

Puzo adds that the cost of co-payments can be a particular challenge for patients receiving radiation therapy. “There are a lot of chemo-related co-pay assistance programs out there. But help is not as frequent for people having radiation,” she says.

Some hospitals and treatment centers offer financial assistance — or aid in connecting with organizations or pharmaceutical companies that can help with costs — so it’s important to be up-front with your doctor or nurse about any issues that might keep you from getting your treatment. “We can’t help you if you don’t tell us,” says Shanika Eberhardt, R.N., clinical coordinator for GYN/oncology for Northside Hospital Cancer Institute in Atlanta. Beyond programs that help with co-payments, Eberhardt says that assistance such as validated parking for patients who come in for appointments also helps ease the collective financial burden that treatment places on patients.

Location can also make it difficult for patients to adhere. “As smaller oncology practices consolidate into larger treatment centers, patients in rural areas may find themselves having to travel a long distance for treatment — leading to increased transportation and lodging costs, additional missed work time and difficulty finding a caregiver who can accompany them,” explains Puzo.

If treatment can’t be arranged closer to home, patients can check with nonprofit organizations that offer financial help to people with cancer, asking if any can provide funding for treatment-related travel.

FEAR AND CONTROL

According to Eberhardt, there is often fear at the beginning of treatment that can present a hurdle. “When I call someone and say, ‘I can get you started in a week,’ they sometimes say, ‘Oh, I’m not ready. Let’s wait until the end of the month,’” she says.

To help allay patient fears that lead to putting off treatment, Eberhardt holds education classes before treatment begins. She typically schedules classes for three to four patients and their caregivers or family members at a time, and covers everything from the basics of cancer cells and chemotherapy to exercise, nutrition, the management of stress and side effects, and the use of wigs and laboratory tests. Knowing what to expect and how to deal with it helps patients feel a greater sense of control, which can boost the likelihood that they’ll adhere to their treatment plans, she says. While not all hospitals offer classes like the one Eberhardt teaches, some do — and those that don’t often have other educational and support services for patients, such as workshops, support groups and helplines. Patients looking for more information should start by asking their social workers, nurse navigators or oncology nurses for recommendations. Patients can also find classes and patient education through advocacy organizations like the American Cancer Society, CancerCare and SHARE Cancer Support. Additionally, an Internet search for cancer education for patients in a particular city and state may help identify nearby classes and support services.

A need for control can also become an issue when patients aren’t convinced they need the treatment in the first place, says Ben Smith, M.D., a radiation oncologist with the University of Texas MD Anderson Cancer Center in Houston.

“Some patients feel conflicted about the potential benefit of treatment,” he says. “I’m a huge believer in the concept of shared decision making, and it’s important for me to understand all the parameters of the patient’s situation. If we’re proactive about trying to pair the right course of treatment with the patient’s schedule, that sets us up for success.”

Some patients also seek to gain a sense of control by exploring alternative therapies, says Penny Daugherty, R.N., an oncology nurse navigator at Northside Hospital Cancer Institute in Atlanta. “Part of what I do is help people work with integrative modalities,” she says. “I try to establish a rapport with my patients so that they understand I’m not questioning what they want to do. I try to help them see that they can do as much of the natural therapies as they can, but also take chemotherapy.”

Another good reason to speak with medical professionals about plans to take natural therapies is that doctors and nurses can explain when certain herbs cannot be taken safely or effectively in combination with cancer therapies.

WHEN PATIENTS DON’T ADHERE

In a study whose results were published in 2016 in the International Journal of Radiation Oncology Biology Physics, Madhur Garg, M.D., clinical director of the Department of Radiation Oncology at the Montefiore Einstein Center for Cancer Care in Bronx, New York, evaluated 1,227 patients scheduled for courses of external beam radiation therapy for a variety of cancer types between 2007 and 2012. Twenty-two percent of the patients in the study missed two or more scheduled radiation therapy appointments during the course of treatment. The study found that across all cancer types, 16 percent of the patients who didn’t adhere to their treatment schedules experienced a recurrence of their cancer, versus a seven percent recurrence rate for patients who had all treatments on schedule.

“The results were alarming,” says Garg. “Missing treatment was associated with poor overall survival when patients missed two or more treatments.” As a result of the study, the Montefiore Einstein Center for Cancer Care is now evaluating how support programs and assistance with issues such as transportation and child care can improve adherence to treatment. Not all hospitals offer this kind of assistance, but advocates encourage patients who need such help to let their health professionals know. Social workers, nurse navigators and oncology nurses are often familiar with organizations that can offer such help if the hospital doesn’t. In addition, patient advocacy organizations are often able to connect patients with local and national resources for help with issues like transportation and lodging.

The problem with missing treatments or stopping radiation therapy early is that it allows cancer cells to continue to grow, explains Smith. And for the patient who wants to resume treatment, it’s not simply a matter of picking back up where you left off. Prior radiation treatments affect the body’s tissues, so making sure the patient receives the right amount of radiation to treat the cancer, but not too much radiation overall, becomes a delicate balance.

“If you’re supposed to get five weeks of radiation, do three weeks and then drop off, you haven’t had enough treatment to cure your cancer,” he says. “But now I’m also not sure if I can safely treat your cancer (because of the prior treatment).”

Adhering to infused chemotherapy, whether delivered in a hospital or in a treatment center, is just as important in preventing the growth of cancer cells. The location where the treatment is delivered typically depends on the level of monitoring required during infusion, says Eberhardt. “Some chemotherapy infuses for 12 to 24 hours, and requires monitoring of vital signs and patient tolerance of the medication,” she says, adding that lengthier treatments are typically administered in a hospital. “Other types are infused weekly or biweekly on an outpatient basis, and those typically take under five hours.”

Patients who don’t adhere to treatment sometimes face barriers that are less visible — particularly a lack of social support. “When I see a patient in consultation and they’re by themselves, I know it’s going to be harder to get them through treatment,” says Smith.

Eberhardt adds that it’s not surprising to her when female patients come in alone. “Women like to do it all” and don’t like to burden others, she says. “The most important thing in encouraging treatment adherence is that all patients have a strong, open relationship with their provider. I don’t ever want any patient to feel that they’re alone.”

While most doctors and nurses respect patients’ rights to make decisions about their own health and treatment, it can still be difficult on health professionals when patients choose not to adhere.

“When a patient chooses not to go forward with treatment, I’ll usually ask, ‘Can I call you in a couple of weeks just to see how things are going?’” Eberhardt says. “I don’t push chemotherapy, but I do push the relationship.”