Hodgkin's lymphoma is one of the most curable cancers. But months of chemotherapy can leave patients sick to their stomach and depressed.
So when Jillian Murzynski suffered nausea and anxiety from treatment last year, losing 20 pounds on an already thin frame, she kept an open mind after doctors at Roswell Park Comprehensive Cancer Center offered her unconventional therapies not too long ago scorned by mainstream medicine.
"There were no negatives, and it could possibly work," she said, recalling the first time she tried acupuncture and acupressure. "I felt I had to try something before I judged it."
Now in remission, the 17-year-old Hamburg student continues to get treated as needed. On a recent visit, she sat in a comfy chair in the pediatric unit and pulled up her pant legs as Doug McDaniel, the cancer center's integrative medicine program manager, inserted needles into her skin and placed an adhesive patch of seeds from the vaccaria plant on her wrist.
If Roswell Park seems like a strange place for this, think again. Cancer centers, as well as hospitals, in growing numbers have embraced complementary therapies, even though many of them remain unproven.
Roswell Park began to roll out a program in 2017, starting with children and young adult patients, that includes acupuncture, Reiki, massage, yoga, nutritional counseling, guided imagery and healing touch. The services are optional and not alternatives to standard cancer treatment.
"These therapies will not cure you, but they can help manage symptoms," said Dr. Kara Kelly, chairwoman of Roswell Park's department of pediatric oncology and co-author of the book "Integrative Strategies for Cancer Patients."
Boom in unconventional therapies
Spurring the trend is the popularity of alternative or complementary medicine, despite questions about whether much of it works. More than 80 million adult Americans spent nearly $34 billion out-of-pocket on unconventional therapies in 2012, according to a National Institutes of Health analysis. Experts say business has continued to boom.
For young cancer patients alone, surveys estimate that as many as 85 percent use complementary therapies, especially dietary supplements, while undergoing conventional treatment. Half the time they do not tell their physicians, risking adverse reactions with conventional cancer treatments, Kelly said.
She sees a problem in cancer patients leaving their physicians in the dark as they search for options outside of mainstream medicine.
"In oncology, we were not having an open dialogue with our patients. We need to break down the barriers to communication so we are the ones pointing people toward what is helpful and steer them away from things that could be unhelpful," she said.
The movement by cancer centers to offer programs that integrate conventional care with other complementary treatments has the feel of a done deal. Still, critics rail against what's happening.
Critics refer to acupuncture as "theatrical placebo," contending that when it works, it is by the power of suggestion. They offer harsher critiques of other therapies, calling them modern witchcraft and studies of them little more than testing whether magic works.
National Cancer Institute-designated comprehensive cancer centers are supposed to be the “best of the best,” bastions of science-based medicine, said Dr. David Gorski, a professor of surgery and oncology at Wayne State University who evaluates controversial medical claims on the blogs Science-Based Medicine and Respectful Insolence.
"Diluting their science with pseudoscience and pandering to dubious treatments gives the impression that those treatments have science to back them up," he said.
Integrative medicine programs, which blend conventional care with complementary therapies, started to arise at major medical institutions in the 1990s. A 2009 study found that a growing number of cancer centers were offering information about complementary therapies.
A more recent analysis in the Journal of the National Cancer Institute Monographs found many were providing the therapies. It examined 45 comprehensive cancer centers and found that, by 2016, the most common therapies offered on-site in the same health system were acupuncture and massage (at 73 percent of centers each), meditation and yoga (69 percent of centers), and consultations on nutrition (91 percent), dietary supplements (84 percent) and herbs (67 percent).
The researchers viewed the embrace of complementary approaches as a positive step. Most cancer patients obtain information about their disease and treatment on their own from the Internet, or from friends and family members, and the information is often wrong, deceptive or potentially harmful, they concluded. Cancer centers are meeting patients’ needs for accurate information, symptom relief and psychological support during and after treatment, and ensuring they use complementary therapies alongside conventional treatments, they concluded.
"Quality of life is a bigger issue with cancer patients than it once was, and we have more survivors," said Mary Reid, director of cancer screening and survivorship at Roswell Park. "Patients are bombarded with severe treatments, and want something that is not drug-related to help. The interest in complementary therapy is also about patients wanting some control over their care."
Integrative medicine at Roswell Park is offered at no charge and has been funded by donations to Roswell Park, including a $50,000 grant from the Hyundai Hope on Wheels initiative, and the Courage of Carly Fund.
Roswell Park's program offers its most extensive services to pediatric and young adult cancer patients. A similar program for adult patients is being gradually expanded. It's a two-pronged service, with some therapies offered at the cancer center, and medical staff also referring patients to vetted practitioners in the community.
"We're building an infrastructure, hiring staff and working out the logistics," said Kelly.
The demand for complementary therapies is undeniable. In the first nine months of the new program from April to December, Roswell Park provided integrative therapy or programming to about 500 different patients and caregivers.
"The response has been tremendous," said Reid.
Evidence at issue
Evidence is at the heart of the controversy over integrative medicine. Critics insist that therapies must work better than placebo and be based on rigorous studies of risks and benefits. The placebo effect occurs when someone believes their symptoms improved even though they were given a fake treatment.
They also complain that cancer centers have taken mainstream supportive interventions known to make people feel better – such as exercise, nutritional counseling, meditation, music, massage and yoga – and incorporated them into integrative medicine programs. Their concern is that this "medicalizes" these interventions and lends legitimacy to questionable therapies.
Acupuncture probably has been the most studied. Skeptics maintain that the benefits are small, but advocates point to growing evidence that acupuncture can help with certain issues, including nausea and some types of pain. Recently, for instance, oncologists who compared real and sham acupuncture in women receiving hormone therapy for breast cancer presented results showing that acupuncture reduced the patients' pain from the medication, thus increasing the chance they would complete their cancer treatment.
It was a large but not perfectly controlled study. The researchers knew if they were providing real or sham acupuncture, a potential source of bias. But Kelly and others say it's difficult to design acupuncture trials in which the patient and researcher don't know who is receiving which treatment. They also note that standard treatments often lack scientific support, especially when physicians use medications for off-label purposes or perform procedures that lack good studies showing their worth.
"In conventional medicine, there is a lot that is not evidence-based," said Kelly.
In some cases, claims for complementary therapies have yet to be rigorously tested. In others, what evidence does exist, indicates the therapy remains unproven or debunked.
Practitioners of Reiki, for instance, believe that placing their hands lightly on or just above a person can activate a spiritually guided energy that aids a person's healing or well-being. It hasn’t been shown scientifically to be useful for any health-related purpose, according to the National Center for Complementary and Integrative Health.
"Reiki is basically faith healing that substitutes a different religious system for Christianity," said Gorski.
Arthur Caplan, medical ethics director at NYU Langone Medical Center, urges hospitals and cancer centers to avoid blurring the lines between things that work and those that don't.
"You have to keep an open mind but not foster an anti-scientific perspective. Cancer won't go away by adopting a positive attitude or eating herbs," he said.
Business of health
The business of health care plays a forceful role.
"A lot of this is marketing. Patients want it, alternative therapies may help with quality-of-life issues, and the guy down the street is doing it," he said. "But there's a danger. Medicine's role is not to indulge people's blind beliefs."
A Roswell Park survey of patients showed many of them were using complementary therapies outside of the cancer center. To Kelly and other integrative medicine advocates, cancer centers are responding to many patients' desire for mixing conventional and complementary medicine, while also conducting research on the therapies and providing information to patients.
Kelly said the cancer center attempts to examine complementary approaches critically, citing her involvement in trials that showed no benefit from homeopathy as a treatment for glioblastoma, a malignant brain tumor, and no improvement from acupressure bands for chemotherapy-induced nausea in children.
"We should do research. Progress is slow, but important work is being done," she said.
Why is complementary therapy so popular? Among other things, experts say, it appeals to a belief in interventions considered natural and increases options for patients, allowing them to personalize their treatment. People like the idea of exerting control over their health care – trying something that likely does no harm and may make them feel better.
These were some of the reasons that drove Jillian Murzynski's parents, Karen and Terry, to consider treating her nausea and anxiety with unconventional therapies.
Karen said she appreciates traditional medicine but leans toward trying complementary care to see if it can help. Faced with Jillian's blood cancer, they were happy to find they could marry the different approaches.
Murzynski, a gymnast and clarinetist at school, has also tried yoga and aromatherapy at the cancer center, in addition to acupuncture and acupressure. She and her parents said the therapies have helped.
"Our attitude with Jillian was that we wanted to turn over every stone," said Karen.