Townsend Letter for Doctors and Patients; 6/1/2002; Isaacs, Linda L.
For most of the past 15 years, I have worked along with Nicholas Gonzalez, MD, 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 each new patient as she 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 in order 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.
In writing this article I drew not only upon my own experience 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.
If you have been diagnosed with cancer, this is most likely a frightening time for you, bringing about radical changes in your life. 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.
The first and most important step in your decision-making process is to 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 with 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 into your appointment with an open mind. Some cancers can be cured with orthodox treatment such as surgery in early stage colon or cervical cancer, or chemotherapy for Hodgkin’s disease. With other cancers the picture may not be as rosy. 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. Many times, if palliative care is all that is available, physicians are hesitant to say so clearly because they do not want to take hope from the patient. 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 find the terminology your doctor uses confusing, 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 disappearance of tumor and “partial remission” describes shrinkage of tumor. For some studies, patients are counted as complete or partial responders if this remission lasts for a month, even if disease subsequently recurs or worsens.
It is important to ask about the typical duration of the response that is achieved. Remission does not always mean that patients will have improved survival. In some clinical trials patients who achieved a complete remission with a 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 particular 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 actually does. A recent study published in the Journal of the American Medical Association titled “Discrepancies Between Patient and Physician Estimates for the Success of Stem Cell Transplantation,” examined the estimates of patients and their physicians of the likelihood of various outcomes (including cure) with stem cell transplantation (JAMA Vol.285 pp.10348, February 28, 2001.) 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 own 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.
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.
The drug gemcitabine, has been approved for the treatment of pancreatic cancer because it offers an improvement in survival — of a few weeks. Many physicians think this is highly significant and they will strongly encourage or even pressure 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 who gets a miraculous cure, possibly hoping that they will get a little extra time during which some major chemotherapeutic breakthrough will happen. 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 or in the medical literature. The National Cancer Institute’s CancerNet (http://cancernet.nci.nih.gov) is a site many patients find helpful. It can help 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. Many patients use them and if you choose to, 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 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.
Various suggestions have been made for how to evaluate an alternative therapy. First of all, find out what is recommended. If a particular 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 alternative practitioners will provide you with names of cancer patients whom you can contact or with written “testimonials” from patients who are pleased with their care. 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 a treatment might work but more research is needed before the medical community will accept it as proven. Orthodox medicine itself is full of stories of drugs that appeared promising in a few patients but subsequently did not succeed in more extensive testing.
In our own practice we do not under any circumstances provide names of patients that one can contact. 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. On our Web site we have available a series of articles about individual patients who have done well, written either by the patients themselves or by other writers. The writers and editors of the publications have the opportunity to review medical records to document the validity of the patients’ stories. This gives current and prospective patients the opportunity to be inspired by others’ success stories 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 in their online discussion of alternative therapies, 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 an alternative therapy. Studies that are published in medical journals typically take many researchers studying many patients (and 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 a therapy doesn’t work, only that it has not been studied in this rigorous way.
The National Cancer Institute (NCI has become more open in recent years to working with alternative therapists to conduct independent reviews of their results. In October 1998 the Office of Complementary and Alternative Medicine was established at the NCI to support the development of high-quality research about complementary and alternative approaches to cancer and to coordinate the NCI’s collaboration with the National Center for Complementary and Alternative Medicine. The Best Case Series Program is an opportunity for alternative practitioners to collect a group of persuasive case histories, along with appropriate medical records, and present them to the NCI for evaluation. This is the first step toward rigorous scientific investigation of a treatment method and if a practitioner is claiming dramatic success, it should be possible for that practitioner to assemble and present a Best Case Series. An extensive description of this process is available on the Office of Complementary and Alternative Medicine We b site at http://occam.nci.nih.gov.
As an example of how this process works, in 1993 Dr. Gonzalez was invited to present selected cases from his own practice as part of an NCI effort to evaluate non-orthodox cancer therapies. Dr. Gonzalez and I prepared for presentation 25 cases representing a variety of poor prognosis 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 adenocarcinoma of the pancreas, with survival as the endpoint. 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 has been completed and was published in the June 1999 issue (Volume 33, Number 2) of Nutrition and Cancer. Of 11 patients followed in the trial, eight of 11 suffered stage IV disease. Nine of 11 (81 percent) lived one year, 5 of 11 lived two years (45 percent), 4 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.
As a result 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. This study has full FDA approval and is being conducted under the Department of Oncology and the Department of Surgical Oncology at Columbia Presbyterian Medical Center in New York.
At the present time, though we treat patients with other cancers and other conditions, our research efforts are focused on pancreatic cancer. Patients who have other cancers, or who have an illness other than cancer, do not have a pilot study report to read. Making the decision to follow this or any other alternative treatment for these patients may be more of a challenge.
The responses of the patients that I surveyed for this article can be helpful because they are, for the most part, patients who have been with the practice for many years. Some of their stories can be read on our Web site. 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.
How were they able to make a decision to pursue this particular treatment? 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. The majority 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 but some did not. Several mentioned that they felt led by God or that prayer had been answered to guide them here. Many reported that they “just knew that it would work.” 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.
Almost all of these patients get inquiries from family and friends with cancer about their treatment choices. Very few of them try to persuade others to follow this protocol – at most, they share their own experiences. They have learned that each individual has to 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 conventional medicine box. If so, I talk more about Dr. Gonzalez’ 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 belief.”
Many of them initially investigated a number of 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. Among their comments:
“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 who 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 spiritual belief.”
Correspondence: Linda L. Isaacs, MD, 36 East 36th St., Suite #204, New York, New York 10016 USA, 212-213-3337, Fax 212-213-3414
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