Alternative reality: Patients who spurn chemo for natural remedies

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Alternative reality: Patients who spurn chemo for natural remedies

What oncologists do – and say – when their patients choose holistic treatments over conventional care

May 27, 2016

Cassandra Callender made headlines when she was diagnosed with cancer as a teen and refused treatment. Since she was a minor, a court ruled that she must undergo chemo.

The breast cancer was curable. The oncologist suggested chemo, radiation and surgery. The patient, 28, chose an alternative route – trips to Mexico for coffee enemas and vitamin infusions.

They didn’t work. About two years after her diagnosis, the cancer was in her liver and no longer curable. But it was treatable – with chemotherapy. This time, the patient agreed.

“For my whole team, that kind of broke our hearts because she’s young, lovely, beautiful, and we just thought, oh shoot, now it has spread and we wish we could have avoided it,” said Dr. Julie Gralow, that patient’s oncologist at Seattle Cancer Care Alliance, clinical care partner for Fred Hutchinson Cancer Research Center.

“But the patients are the ones who, ultimately, have the right to choose – with good education and recommendations from us,” said Gralow, who monitored the patient’s overall health amid those alternative therapies. She continues treating her.

News of another chemotherapy refusal is reviving focus on alternative cancer therapies – and on what advice doctors should give patients who spurn the conventional for the natural.

At 17, as a minor with lymphoma, Cassandra Callender was confined to a hospital last year by Connecticut officials and forced to undergo chemo. She wanted to try holistic remedies, calling chemotherapy “poison.” In April, Callender revealed that a new mass was detected in her lung. Now 18, legally an adult, she said she’s pursuing “alternative treatments.”

That choice seems to be gaining favor for some who have faced malignancies, say researchers and doctors.

Among North American cancer patients, alternative medicine use has been rising since 2000 as a complementary tactic to Western therapies, reports the National Institutes of Health. It’s particularly popular among survivors of melanoma, breast and colorectal cancer.

Of course, devotees’ full faith in natural cures likely puts them at odds with their oncologist’s guidance. Women who were prescribed chemo for early-stage breast cancer and who also used several types of alternative medicine were less likely to start chemotherapy than nonusers, according to a study published this month in JAMA Oncology.

“We think that these results point to a need for patients and clinicians to engage in informed decision making about [alternative medicine] use following a cancer diagnosis,” said lead author Dr. Heather Greenlee of Columbia University’s Mailman School of Public Health. She’s a former postdoctoral fellow at Fred Hutch.

Greenlee and her colleagues studied 685 U.S. women with invasive breast cancer that had not spread. Nearly nine out of 10 were taking natural supplements, herbs and minerals, or practicing mind-body therapies. Among the participants for whom chemotherapy was indicated, 11 percent didn’t start that treatment, researchers reported. 

“Conversations [between physicians and patients] need to include why people may be interested in using [alternative medicine], what effects they are hoping to achieve, and the state of science on the efficacy of different therapies,” Greenlee said via email.

For oncologist Dr. Bart Scott, those chats are becoming more common. Following diagnoses, about 20 to 25 percent of his patients tell him they plan to refuse or put off chemo and/or radiation in favor of natural therapies, he estimated. Five years ago, about 10 percent of his patients took similar stands.

What’s the best path forward with patients who opt to opt out?

“I always say, ‘you can choose what you would like to do. I’m your adviser but I’m not your decision maker.’ I try to take a data-driven approach,” said Scott, a medical oncologist at Seattle Cancer Care Alliance, specializing in the treatment of patients with myelodysplastic syndrome – diseases of the bone marrow that are sometimes referred to as “preleukemias.”

For patients swayed by hearing of a person whose malignancy was cured by a natural remedy, Scott has a ready response: What works for one person may not work for another. He shows them results from studies and randomized clinical trials involving hundreds of cancer patients, many or most of whom were successfully and safely treated with science-derived therapies. His non-confrontational script is long on hard facts.

Does that sway any alternative-or-bust attitudes?

“Usually people will say, ‘OK, that makes sense. This study you were talking about has 150 people in it and the thing I read online has just one person in it so, yeah, you have to weigh the evidence that’s going to work, and one person is not much evidence.’” Scott said.

Some patients stick to their holistic hopes for a cure. For those patients, Scott offers to monitor their health in his clinic. But the majority of that subset chooses to go it alone, he said.

“I actually don’t see them again until it’s become apparent that it’s going to be a bad choice. Almost all of the time, they come back,” Scott said. “It’s too late at that point, usually.”

Cortney Campbell

Cortney Campbell, 33, pursued alternative therapies after being diagnosed with Hodgkin disease in 2008.

Courtesy of Cortney Campbell

One alternative-therapy advocate who relied solely on a holistic protocol after a 2008 cancer diagnosis cites her partnership with a supportive physician as a key to her survival.

“I found an oncologist who didn’t scare me or push me away. If more people had that, I feel like they would be more successful with alternative therapies,” said Cortney Campbell, 33, who resides in the Atlanta area. “A lot of people, the biggest mistake they make is they leave the oncologist’s office and they’re not being monitored.”

Campbell’s original doctor had prescribed four weeks of chemotherapy followed by radiation to treat her stage 2 Hodgkin disease. Fearing the treatment would make her infertile, Campbell found an oncologist who believed she had “time to try alternative therapies” and agreed to monitor her while she relied on a raw, vegan diet and a long menu of natural supplements. She now has three children and her oncologist, who continues to see her, has told her she is in “clinical remission.”

“It’s so discouraging when you hear that people leave their oncologists, go try these alternative treatments, go broke because nothing is covered by insurance, and there’s just this lack of support,” said Campbell. “We need doctors to listen to our concerns, teach us how our cancer behaves, don’t try to scare us, just be there for us, just be our advocates.”

But physicians have a responsibility to go beyond listing the best treatment choices, acknowledging their awareness of alternative medicine and then simply telling cancer patients, “We respect the wishes of competent adults, so it’s up to you to decide,” said bioethicist Dr. Arthur Caplan of the NYU Langone Medical Center.

“I think that’s wrong,” Caplan said. “I think we should not be as fearful in mainstream medicine of offering strong opinions about what’s the best course.

“So in dealing with adults, I don’t think [informing patients] is inconsistent with making a strong recommendation against quackery or unproven remedies – or against people trying to empty your pocketbook when you’re coping with a grim disease.”

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Bill Briggs is a former Fred Hutch News Service staff writer. Follow him at @writerdude. Previously, he was a contributing writer for NBCNews.com and TODAY.com, covering breaking news, health and the military. Prior, he was a staff writer for The Denver Post, part of the newspaper's team that earned the Pulitzer Prize for coverage of the Columbine High School massacre. He has authored two books, including "The Third Miracle: an Ordinary Man, a medical Mystery, and a Trial of Faith." 

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