Deciding whether to pursue an alternative cancer therapy
Before his untimely death in July 2015, I worked with Nicholas Gonzalez, M.D., for more than 20 years, offering a nutritionally based therapy to patients with cancer and other degenerative diseases. We realized very quickly that patients who had not thought through their treatment choice rarely stuck with their program long enough to see if it worked. Thus, we tried to understand the motivations of new patients as they decided to pursue this treatment. Their thought processes determined their compliance with the therapy and affected their interactions with us, their physicians.
In addition, we have strived always to steadily accumulate data on the method we use to demonstrate its merit – and if patients do not follow a therapy, it is impossible to tell if it would have worked. So, to best help the patients, and to make any progress in researching this method, we needed to be as sure as possible that our patients had made clear decisions and would follow through with them.
If you have been diagnosed with cancer, this is most likely a frightening time for you. Decisions about therapy may have to be made very quickly after the news is delivered. Your physicians may have forceful opinions about what steps need to be taken but friends and family may present other information to you, leaving you bewildered among treatment options.
Five things to consider …
- Learn about the disease that you have.
- Go to your appointment with an open mind.
- Confused by the terminology your doctor uses? Ask questions!
- Do further research on the Internet.
- To evaluate an alternative therapy, begin by finding out what is recommended.
First, learn about the disease that you have. For some patients, this seems natural while to others it may be frightening or confusing. But learning about your disease, and the options that you have for treatment is the first step toward choosing which of those options you pursue. Leaving the decision to your physician or to your family may place you into a treatment protocol that you are unable or unwilling to put into practice or that you will subsequently regret.
A good place to start gathering information is the physician who made the diagnosis and perhaps also with an oncologist (a physician who specializes in the treatment of cancer). Before your appointment, you might consider making a list of questions to ask. It is usually helpful to take along a family member or friend to listen with you, since they may pick up information you miss.
Go to your appointment with an open mind. Some cancers can be cured with orthodox treatment such as surgery in the early-stage colon or cervical cancer, or chemotherapy for Hodgkin’s disease. With other cancers, the picture may not be as good. Cancer treatment is loosely classified as either “curative” or “palliative.” Palliative therapy is meant to alleviate symptoms, shrink tumors or prolong life but is not anticipated to cure disease. If palliative care is all that is available, physicians may be hesitant to say so clearly and unambiguously because they do not want to take hope from the patient. (1)
Some patients may not ask questions in this situation because they do not want to hear the answer. Our experience is that many of our best patients have come to us because orthodox therapy had no cure for them and after hearing that they began to search for another answer. They did the research, faced the unpalatable facts, and refused to believe that there was no hope.
If you are confused by the terminology your doctor uses, ask questions. Sometimes words may mean something different than what you might assume. For example, “complete remission” does not mean the same thing as “cure.” “Complete remission” describes the disappearance of the tumor and “partial remission” describes the shrinkage of the tumor. In some studies, patients are counted as complete or partial responders if this remission lasts for a month, even if the disease subsequently recurs or worsens. “Response” is sometimes interpreted by patients as “cure,” but instead can mean shrinkage of tumor or improvement of symptoms. “Controlled” or “contained” means stabilization of tumor size, not cure or prevention of future spread.
Remission does not always mean that patients will have improved survival. In some clinical trials, patients who achieved a complete remission with treatment would subsequently relapse and their survival was no better than other patients. Even the word “cure” may not mean what you think it does; it often means no evidence of cancer is found for a five-year period but some cancers can recur later than that. By asking specific questions about the outcomes that matter to you, you can better decide whether a palliative treatment is what you want to do.
A patient who does not ask questions may think that a treatment provides much more benefit than it does. A study published in the Journal of the American Medical Association examined the estimates of patients and their physicians of the likelihood of various outcomes (including cure) with stem cell transplantation. (2) Patients were significantly more optimistic than their physicians in all cases. The discrepancy between the expectations of the physicians and patients was greatest when the likelihood of a cure with the procedure was lower. The study was not designed to explain why the discrepancy described came about – whether the physicians were not clearly communicating or whether the patients were choosing not to believe the information they were given.
My opinion is that most oncologists are not being deliberately deceptive but are motivated to emphasize the possibility of success for what they believe is the good of the patient. Many oncologists will encourage patients to follow through with the treatment that makes the most sense to the oncologist, even if the likelihood of long-term success is documented to be slim. (3) Regrettably, financial conflicts of interest may be present, as oncologists make money from chemotherapy that is administered in their offices. (4, 5, 6)
Orthodox therapy may be equally uncharted — or worse
Different individuals can look at the same information and make very different choices. For example, physicians are highly trained in reading the medical literature and when they get cancer, they become highly motivated to do research. We have patients who are physicians who opted very early in their disease not to pursue orthodox therapy because the chances of success were not good. We have been contacted by other physicians who informed us that they would pursue this approach only after they had finished working their way down a list of chemotherapeutic treatments that made sense to them but had no documentation of working for their disease.
As an example, the drug gemcitabine has been approved for the treatment of pancreatic cancer because it offers an improvement in survival – of a few weeks. (7) To some physicians, this is highly significant and they will strongly encourage their patients to proceed with it. Some patients look at the data for gemcitabine with pancreatic cancer, decide against it and look for other options. Some go ahead with gemcitabine, possibly hoping that they will be the one that gets a miraculous cure, possibly hoping that they will get a little extra time during which a major chemotherapeutic breakthrough will be announced. This is an individual decision, but if you do not get the statistics about your treatment, someone else will make this decision for you.
After speaking with your doctor, you may wish to do further research on the Internet. The MEDLINE/PubMed site lets you search the medical literature directly. Original research papers can be somewhat dense to read, even for medical professionals, but most motivated lay people can make sense of them.
After you’ve done your research, what next? If a curative treatment exists for your disease, go ahead with it. If the only treatments available are palliative, then you may wish to consider complementary and/or alternative therapies. Complementary therapies are therapies that are used along with orthodox therapies such as surgery, chemotherapy, and radiation. If you choose to use them, it is important that your orthodox physicians know that you are doing so because it may interact with the therapy that they are providing. In the case of side effects, it may be difficult to know whether the orthodox or complementary therapy is causing the problem.
Alternative therapies are those that are used in place of palliative treatment such as chemotherapy and radiation. There are a wide variety of alternative treatments available. How to decide? At this point, you are entering uncharted waters. However, orthodox therapy may be equally uncharted or, worse yet, have been clearly demonstrated not to work very well for your condition.
To evaluate an alternative therapy, begin by finding out what is recommended. If treatment involves something that you simply will not do, look elsewhere. For example, a part of our therapy that people frequently find unappealing is the detoxification routine called the coffee enema. Most patients, once they try the coffee enemas, report that they like them very much because they make them feel better. We routinely hear from startled patients that the coffee enemas have become their favorite activity of the day. However, callers sometimes ask if we can design a program that does not include coffee enemas because they will not do them or have decided that the enemas are unnecessary. We simply suggest that these patients find a program they are willing to do.
Some patients wish to combine multiple different alternative treatments. As an example, we are frequently asked if our enzyme-based program combines well with intravenous Vitamin C, but we believe it interferes with the action of the enzymes. In our opinion, combining therapies makes it impossible to determine which therapy is helping, what is causing any problems or side effects, or whether the treatments are counteracting one another. If a patient is determined to follow multiple different approaches simultaneously, we suggest they seek care from someone who agrees with this philosophy.
Some alternative practitioners will provide you with contact information of cancer patients who are pleased with their care, or with written “testimonials.” You may read some of these and wonder why the stories do not make physicians think these treatments have been proven to work. However, sometimes the cases are not well documented with medical records or the patients might have done well because of previous treatment that they received. Individual stories can suggest that treatment might work but more research is needed before the medical community will accept it as proven. (8)
In our own practice, we do not provide contact information for patients. Most of our patients already get many phone calls because friends and family who know of their success pass on their phone numbers to others. There have been several instances in the past where patients have been upset by the demands for reassurance of other patients, even to the point of deciding to change their telephone numbers.
The journal Alternative Therapies in Health and Medicine published a series of case reports about individual patients of ours who have done well. Publications such as these give current and prospective patients the opportunity to be inspired by others' success while sparing our patients the emotional wear and tear that can be produced by phone calls from other patients.
Some authorities such as the American Cancer Society will encourage you to ask for published research papers from the alternative practitioner you might be considering. This recommendation is made knowing that extensive documentation will not exist for alternative therapy.
Studies that are published in medical journals typically take many researchers studying many patients (with a very large budget) to produce their results. Without the assistance of academic medical centers and large groups of patients, alternative therapists cannot hope to do the research that orthodox physicians would find persuasive. Lack of such publications does not prove that therapy doesn’t work, only that it has not been studied in this rigorous way.
As an example of the long and rigorous process required to produce scientific papers, in 1993 Dr. Gonzalez was invited to present selected cases from his own practice as part of a National Cancer Institute (NCI) effort to evaluate non-traditional cancer therapies. Dr. Gonzalez and I prepared for presentation 25 cases representing a variety of poor prognoses or terminal malignancies who had either enjoyed long-term survival or tumor regression while following this program. Included in the presentation were patients diagnosed with advanced breast, lung, prostate, and other cancers.
After the session, the then-associate director suggested we pursue a pilot study of our methods in ten patients suffering inoperable pancreatic cancer. He suggested pancreatic cancer because the standard survival for the disease is so poor and an effect could be seen in a small number of patients in a short period of time. Nestec (the Nestle Corporation) agreed to fund the trial, which began in January 1994.
The study was completed and the results were published in the June 1999 issue of Nutrition and Cancer. (9) Of 11 patients followed in the trial, eight of 11 suffered Stage IV disease, the most advanced stage. Nine of 11 (81 percent) lived one year, five of 11 lived two years (45 percent), four of 11 lived three years (36 percent) and two lived longer than four years. In comparison, in a trial of the drug gemcitabine, of 126 patients with pancreatic cancer, not a single patient lived longer than 19 months. (7)
Because of the pilot study, the NCI and the National Center for Complementary and Alternative Medicine approved funding for a large-scale clinical trial comparing our nutritional therapy against gemcitabine in the treatment of inoperable pancreatic cancer. Unfortunately, the study was ineptly managed by the academicians involved, who were used to studies involving drugs, not lifestyle changes, and many if not most of the patients assigned to the nutritional protocol did not comply with their treatment.
A full description of the problems we had with the study is beyond the scope of this article, but like so many other studies in alternative medicine, because of flaws in design and execution, this study failed to answer the questions it was meant to address. (See Dr. Gonzalez’s book What Went Wrong or the article Research Battles for further information.)
So, while we have published case reports available for many types of cancer, and have our published pilot study available for patients with pancreatic cancer, the statistical information available for some types of chemotherapy is, now, beyond our ability to provide. Of course, in the case of chemotherapy, published research for some cancers may show that the treatment does not work very well, and chemotherapy is sometimes administered even though little or no research has been done for its use in cancer. Though orthodox practitioners may dismiss case reports such as ours as “anecdotes,” some oncologists suggest that patients receiving marginally effective or unproven chemotherapy ignore statistics or focus on the occasional patient who does much better than average – i.e., an anecdote. (1, 6, 10)
So then, how do patients make the decision to follow an alternative treatment protocol? In writing this article I drew not only upon my own observations but also on the results of a survey I sent to 50 of our long-term patients. They were kind enough to share with me some information about how they learned about our treatment, how they made the decision to pursue this protocol, how they motivated themselves to persevere, and how they handle inquiries that they receive from others about their treatment choice.
The patients that I surveyed are patients who have been with us for many years. Some of their stories can be read on our website. Some of their cases were included in the 1993 presentation to the NCI. They had to make their decisions well before we had any published results whatsoever.
They heard about this treatment through many different routes. Some were referred by other patients, some by alternative or orthodox medical practitioners, some heard a lecture, some read an article, some saw this work mentioned in a book about alternative cancer therapies. Most of them decided to follow through with it not because a health practitioner or current patient talked them into it but because they learned about the program’s underlying theory and it made sense to them. Many of them had a long-term interest in alternative therapy; some did not. They stayed on their programs because they felt that their health was improving because they had done better than their original physicians said they would and because they established a relationship of trust with us.
When they get inquiries from family and friends with cancer about their treatment choices, few of them try to persuade people to follow this protocol – at most, they share their own experiences. They have learned that everyone must make their own decision about what treatment program makes sense. As one patient wrote, “When I talk to friends, I try to determine if they are able to think outside of the traditional medicine box. If so, I talk more about Dr. Gonzalez’s program; if not, I listen… If I can persuade by my personal example, fine, but I will not try to talk someone into doing something alien to their beliefs.”
Many of them initially investigated several treatment options but eventually, they made the decision to stop searching – to settle down on one option and pursue it to the best of their ability. As another patient wrote, “I think it’s really important to find people and treatments you trust and stick with them. I come across a lot of people who are ill and in a lot of fear and they keep jumping from one thing to the next hoping for an instant miracle. They are not willing to make a commitment and ’do the work,’ and they’re not getting well.”
Many of them are convinced that inner resources are very important as patients embark upon an alternative therapy. Such qualities as faith, perseverance, and enjoyment of life were mentioned, as well as a willingness to reach out to friends and family for help.
“You must be very focused with the attitude that you are running a marathon — not a sprint.”
“It has to ‘make sense' and ‘feel right’ to the patient. The patient must be willing to do whatever she can to get well. The patient must be willing to be unsupported by the medical establishment.”
“Since I had endured surgery and chemo previously, I was very willing to try this — had nothing to lose and a life to gain.”
“The people who will do best are the ones not intimidated by the medical profession and its scare tactics, these people need to know the control is in their hands, not the physicians’, and that the patient is responsible for the healing.”
“I think a positive attitude helps, as well as a strong commitment to the program, and looking upon it as a privilege, not a punishment.”
“It truly takes someone who is willing to interrupt their status quo lifestyle and prioritize their health.”
“You need the help of others. I have six friends that organize a pill sorting party every 40 days and we have become very close.”
“I imagine the type of patient who does well on this type of approach is a person who takes time to understand health principles; believes in the program; trusts (their practitioner); is willing to make lifestyle changes, perseveres and never gives up; maintains a sense of humor; has support at home; and has a deep belief in God.”
- Von Roenn JH, von Gunten CF. Setting goals to maintain hope. J Clin Oncol 2003;21:570-574.
- Lee SJ, Fairclough D, Antin JH, Weeks JC. Discrepancies between patient and physician estimates for the success of stem cell transplantation. J Am Med Assoc 2001;285:1034-1038.
- The AM, Hak T, Koeter G, van Der WG. Collusion in doctor-patient communication about imminent death: an ethnographic study. BMJ 2000;321:1376-1381.
- Frieden J. Executive cites concerns about use of cancer drugs. Internal Medicine News 2006;39:67.
- Butcher L. UnitedHealthcare’s Lee Newcomer, MD: Change Incentives so Oncologists Can Be Reimbursed for Taking Time to Think about Cost-Effective Therapies with Same Outcomes as More Expensive Methods. Oncol Times 2008;30:44-48.
- Kolata G, Pollack A. Costly Cancer Drug Offers Hope, but Also a Dilemma. New York Times July 6, 2008.
- Burris HA, Moore MJ, Andersen J et al. Improvements in survival and clinical benefit with gemcitabine as first-line therapy for patients with advanced pancreas cancer: a randomized trial. J Clin Oncol 1997;15:2403-2413.
- Isaacs LL. Evaluating anecdotes and case reports. Altern Ther Health Med 2007;13:36-38.
- Gonzalez NJ, Isaacs LL. Evaluation of pancreatic proteolytic enzyme treatment of adenocarcinoma of the pancreas, with nutrition and detoxification support. Nutr Cancer 1999;33:117-124.
- Audrey S, Abel J, Blazeby JM, Falk S, Campbell R. What oncologists tell patients about survival benefits of palliative chemotherapy and implications for informed consent: qualitative study. BMJ 2008;337:a7