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Caring (Really) for Patients Who Use Alternative Therapies for Cancer

From the Division of Hematology and Internal Medicine and Area General Internal Medicine, Mayo Clinic, Rochester, MN.

Address reprint requests to Morie A. Gertz, MD, Division of Hematology and Internal Medicine, Mayo Clinic, 200 First St SW, Rochester, MN 55905; email: gertz.morie{at}mayo.edu

HERE’S THE CASE: A 59-year-old woman with mantle-cell lymphoma was under observation without therapy. There was no evidence of hepatic involvement. Her recent medications had included shark cartilage (three capsules twice daily), bee pollen, beta-carotene, echinacea, garlic, selenium, vitamin C, and vitamin E. At a routine monitoring visit, her AST concentration was 309 U/L (compared with 27 U/L 3 months earlier; normal 29 U/L) and her ALT was 572 U/L (normal < 29 U/L). Additional history revealed the initiation within the prior month of therapy with una de gato (cat’s claw).¹ After some discussion with the patient, no suitable alternative explanation for the increase in transaminase concentrations could be postulated, and it was mutually agreed that the cat’s claw would be discontinued and all other medications continued. At a follow-up recheck 60 days later, her AST concentration had normalized and she continued on all other supplements. She subsequently developed disease progression and received in sequence: alkylating agent-based therapy, purine nucleoside analogs, and rituximab.

THE PROBLEM
It has been estimated that 83 million Americans used alternative therapies for malignant and nonmalignant disorders. In 1997, total expenditures were estimated to be 32.7 billion dollars.² Four hundred twenty-five million alternative therapy visits were estimated, compared with only 388 million visits to primary care providers. Estimates suggest that from 70% to 90% of patients will not mention alternative therapy visits to their physicians.

The reasons why people seek alternative therapies for cancer are broad. Many seek out alternative therapy when options for conventional therapy have been exhausted. There is also the recognition that, for some tumor systems, conventional therapy is of limited effectiveness and that the side effects of chemotherapy, surgery, and radiation are feared. For some tumor systems, no conventional therapy exists and the standard therapy is participation in phase I or phase II trials. Many patients perceive that the conventional approach is emotionally or spiritually empty and provides neither comfort nor solace.³

WHY DO PATIENTS SEEK ALTERNATIVE THERAPIES?
A large lay literature on alternative therapies suggests that sufficient will and determination can overcome cancer. Many alternative therapies invent a simple etiology to explain all cancers linked to a common etiology, usually toxin-based.⁴ The emphasis on nutritional aids as cancer preventatives, and for treatment, is strong and permits patients to exert a significant degree of control and maintain a sense of contributing to the care of their malignancy.

A widely disseminated literature on unorthodox treatments exists in print and on the Web for patients interested in seeking alternative therapies. There has been a two-decade-long movement toward more natural methods to treat a host of diseases, including cancer, and there is a significant degree of magical thinking about the role of the bowel in contributing to malignant disease and as yet unsubstantiated claims regarding the mind’s ability to control cancer. Cancer patients may feel a loss of control that leads them to use alternative therapy as a way to exercise some control over their care.

WHERE ARE THE REGULATIONS?
Vitamins and herbs are considered to be nutritional supplements and are not regulated by the United States Food and Drug Administration (FDA). In 1938, the Homeopathic Pharmacopeia was recognized. Senator William Proxmire eliminated the maximal values for supplements, so that many vitamin supplements can have 400% or 500% of the recommended daily allowance of water-soluble vitamins. In 1994, legislation allowed herbal medicines and other food supplements to be sold over the counter without review by the FDA, and neither the FDA nor any other government agency examines herbal remedies for safety and/or effectiveness.

HOW DO PATIENTS LEARN ABOUT ALTERNATIVE THERAPY?
A quarter of patients learn about alternative therapies via the lay media, including newspapers, television, magazines, and the hundreds of Web sites that sell bogus cures for cancer. There are currently 17,000 health-related Web sites.

Approximately one sixth of patients learn about alternative therapy from well-meaning friends and family, and a remarkable 35% learn about alternative therapy from their physician.⁵ Cover stories in Time magazine have emphasized the power of vitamins and suggested that they can help fight cancer. There have been Timecover stories on faith and healing and how spirituality can promote health.

WHAT THERAPIES DO PATIENTS SELECT?
It has been estimated that fewer than half of patients with cancer receive only conventional therapy; approximately 44%, as the patient described at the beginning of this article, combine conventional and alternative methods, and 10% of patients with cancer use unorthodox therapy only and forgo any form of conventional anticancer treatment. For patients who seek unorthodox therapy only, the most common tumors are genitourinary, CNS, and hematologic. Among patients receiving unorthodox therapy only, half have local disease, a quarter have regional disease, and 20% have distant metastasis. Multiple studies have demonstrated that the frequency with which alternative methods are used varies directly with education and income. Patients with more years of education and higher income levels seem to have greater access to alternative care information and a larger social network to become familiarized with these methods. They also possess the resources to travel to centers that offer such therapies.

There are scores of alternative therapies in current use, but the most frequently used currently include dietary treatments, herbs, homeopathy, hypnotherapy, mental imagery, meditation, megavitamins, relaxation, and spiritual healing. Many alternative therapies have in common a nontoxic treatment that is secret or natural. A common theme is a conspiracy by physicians to prevent full recognition of the value of their product. Cancer mortality rates in physicians and first-degree relatives are identical to those of the public at large,^6,7 suggesting that, if a conspiracy exists, physicians extend the secrecy to themselves and to their loved ones.

It is common for promoters of fraudulent cancer therapies to recommend against biopsy of a potentially malignant site, claiming that the biopsy itself would spread the cancer by exposing it to oxygen. They often recommend unorthodox testing, such as heavy metal analysis of the blood, hair analysis, nail analysis, and iridology. Although some of these therapies propose a simplistic mechanism to explain the etiology of malignancy (eg, laetrile promoted the release of cyanide selectively in tumor tissues), many of the newer therapies use medical buzzwords to enhance the legitimacy of the product. Some current fraudulent treatments claim specific antiangiogenic properties. Others have "demonstrated" upregulation of cytotoxic T lymphocytes to fight cancer, and still others claim cytokine release to augment the patient’s immune system, specifically targeting the tumor. These catch phrases can confuse the unsophisticated consumer who is trying to distinguish between conventional and alternative therapies, both of which now use the same language to promote their products. Generally, the data to support these claims are of dubious quality. Supportive data are lacking.

EXAMPLES OF ALTERNATIVE TREATMENTS
The National Center for Complementary and Alternative Medicine divides alternative therapies into five major domains: (1) alternative medical systems, (2) mind-body interventions, (3) biologic-based therapies (herbs), (4) manipulative and body-based systems (massage), and (5) energy therapies (magnets). Metabolic therapies usually involve highly restrictive, low-calorie diets that do not permit fat, refined sugars, or salt. Linda Burfiele Hazzard advocated a severe calorie-restricted diet in the late 1800s and was eventually charged with murder and convicted. In many of the metabolic approaches, purgatives are required to "detoxify" the intestinal tract, postulated as a source of toxins that lead to malignancy. Some diet therapies date back to the California grape diet of the early 1960s and today include the macrobiotic diet, which is primarily vegetarian and includes high levels of cereal grains, seaweed, and beans. The diet tends to be low in vitamins D and B₁₂, iron, calcium, and calories. Megavitamin therapy usually includes a restrictive diet with nutritional supplements, including dozens of water-soluble vitamin preparations, minerals, and frequently shark cartilage.

Shark cartilage was popularized when the 1992 book Sharks Don’t Get Cancer⁸ was published. Shark cartilage has been claimed to have antiangiogenic properties when administered orally. Pharmacokinetic studies have shown that the molecular size of shark cartilage makes it virtually unabsorbable by the intestinal tract. One study published in the Journal of Clinical Oncology did not demonstrate efficacy in various malignancies.⁹

Mental imagery has a spiritual undertone, and it requires the patient to imagine the immune system attacking and destroying the tumor. This is an outgrowth of conventional biofeedback approaches to the management of nonmalignant disorders. It has never been demonstrated that patients can influence the course of their disease, although they may feel better about their situation. However, feelings of guilt are a real problem if the disease continues to advance despite their best spiritual or mental efforts. These patients facing cancer progression may believe that it was partly their fault. Norman Cousins, in his best-seller Anatomy of an Illness as Perceived by the Patient: Reflections on Healing and Regeneration,¹⁰ emphasized the issue of attitude and outlook when dealing with an illness. Although frequently cited by cancer patients, Cousins’ problem was rheumatic and not malignant. Immunoaugmentative therapy was popularized by Lawrence Burton in the Bahamas and begins with a "computer"-directed treatment selection.¹¹ Patients are reportedly treated with blocking protein, tumor antibody, tumor complement, and deblocking protein. Our laboratory obtained a vial of one of the component therapies and subjected it to electrophoresis. No protein was detected. These treatments are given daily by subcutaneous injection over a 3-week period. The program is offered for a host of malignancies and is now being used for the management of AIDS.

Since 1992 there has been an Office of Alternative Medicine, renamed the National Center for Complementary and Alternative Medicine, under the auspices of the National Institutes of Health. The Center is making a conscious attempt to study scientifically several unproven treatments for cancer. Funded studies to date have included bioelectromagnetics, antioxidants, macrobiotic diets, massage therapy, and imagery to boost the body’s immunity.

WHAT HARM IS THERE ANYWAY?
Usually there is no harm. There are therapies that would be considered low risk, such as massage, spiritual healing, therapeutic touch, hypnosis, and relaxation, which do not interfere with conventional therapy. Clearly, any therapy is potentially dangerous if it delays effective or curative conventional therapy. The issue of spiritual therapy, and the guilt it places on patients whose disease progresses for not being sufficiently committed or motivated to the therapy, has not been adequately addressed by promoters of this technique. As the patient above demonstrates, the lack of documented toxicity for herbal products does not equal safety, and there are reports of the development of interstitial nephritis from Chinese herbs. Reports also exist in the literature of toxicity related to excessive consumption of vitamin A, vitamin D, vitamin B₆, zinc, and selenium.¹² The financial impact on the patient of expenses that are generally not reimbursed should not be underestimated.

WHAT CAN A PHYSICIAN DO?
Many patients who pursue alternative therapy do so because they feel that their alternative practitioner listens to them. Physicians need to recognize that patients have the right to forgo conventional therapy. Common law recognizes the patient’s autonomy in making treatment decisions, and this must be respected by the physician. In most instances, the patient wants the physician’s opinion regarding the therapy, but a judgmental or dismissive attitude often drives the patient away. Ridicule is always harmful. It would be legitimate to say "I would not be comfortable watching a family member do this," while still offering support to patients and continuing to monitor them during alternative therapy.

Most patients will not specifically communicate to their physicians about their use of alternative therapy. It becomes important to specifically ask during the course of therapy: "Are you considering or are you currently using therapies that are usually considered unconventional or alternative?" Good communication skills between physician and patient remain the best strategy to combat inappropriate use of alternative medicine. Reassuring patients of continued support no matter what therapy they select remains a key, so patients are not in fear of abandonment for being honest about their selection of a treatment. It is worth remembering that most patients do not have the scientific background to distinguish, from completely fraudulent therapies, therapies that have been shown to be effective and have a rational scientific basis or at the very least are part of investigational programs that will enhance the body of knowledge regarding their malignancy. A nonjudgmental dialogue becomes paramount. A particularly useful Web site to which patients can be referred, so that they may get additional information about an alternative therapy, is http://www.quackwatch.com.

An understanding and caring physician who can provide time freely to listen and give emotional support, particularly when no effective therapy exists, is the most potent way to combat the use of fraudulent therapies by cancer patients. Self-righteous behavior on the part of a physician may only serve to sever the relationship between patient and physician when the patient is in greatest need of support. We need to remain sensitive and supportive and not be dismissive when patients explore all of their options. Concurrence with a patient’s decision to use alternative therapy for cancer does not equate with sanction.

REFERENCES

1. Santa Maria A, Lopez A, Diaz MM, et al: Evaluation of the toxicity of Uncaria tomentosa by bioassays in vitro. J Ethnopharmacol 57: 183-187, 1997[Medline]

2. Eisenberg DM, Davis RB, Ettner SL, et al: Trends in alternative medicine use in the United States, 1990-1997: Results of a follow-up national survey. JAMA 280: 1569-1575, 1998[Abstract/Free Full Text]

3. Eisenberg DM, Kessler RC, Foster C, et al: Unconventional medicine in the United States: Prevalence, costs, and patterns of use. N Engl J Med 328: 246-252, 1993[Abstract/Free Full Text]

4. Straus SE: Complementary and alternative medicine: Challenges and opportunities for American medicine. Acad Med 75: 572-573, 2000[Medline]

5. Lerner IJ, Kennedy BJ: The prevalence of questionable methods of cancer treatment in the United States. CA Cancer J Clin 42: 181-191, 1992[Abstract]

6. Matanoski GM, Seltser R, Sartwell PE, et al: The current mortality rates of radiologists and other physician specialists: Deaths from all causes and from cancer. Am J Epidemiol 101: 188-198, 1975[Abstract/Free Full Text]

7. Rafnsson V, Gunnarsdottir HK: Causes of death and incidence of cancer in physicians and lawyers in Iceland [in Swedish]. Nord Med 113: 202-207, 1998[Medline]

8. Lane IW, Comac L: Sharks Don’t Get Cancer. Garden City Park, NY, Avery Publishers, 1993

9. Miller DR, Anderson GT, Stark JJ, et al: Phase I/II trial of the safety and efficacy of shark cartilage in the treatment of advanced cancer. J Clin Oncol 16: 3649-3655, 1998[Abstract]

10. Cousins N: Anatomy of an Illness as Perceived by the Patient: Reflections on Healing and Regeneration. New York, NY, Bantam, 1991

11. Green S: Immunoaugmentative therapy: An unproven cancer treatment. JAMA 270: 1719-1723, 1993[Abstract]

12. Snodgrass SR: Vitamin neurotoxicity. Mol Neurobiol 6: 41-73, 1992[Medline]

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