Electronic help

        As the fog slowly lifted in my mind, I remembered the Internet and began to wonder whether I could use this tool to educate myself about Barrett's Esophagus and its related cancer. I had nothing to lose by trying.
        I was amazed at the sheer volume of material on the Web addressing the topic. There were sites that promised, with varying degrees of credibility, to cure or prevent esophageal cancer with beta-carotene, green tea, or Chinese herbs. There were those, mostly directed to a surgical readership, that terrified me with reams of scientific data that proved that my only safe pathway was total esophagectomy. This was getting to be awfully hard to ignore.
        As with most things, however, persistence paid off. I gradually found my way past well-meaning but ill-informed cybernetic advisers; past obvious quackery and snake oil peddlers; and, ultimately, to respected and professional leaders in the field of gastroenterology with a special interest in and experience with Barrett's Esophagus.
        The Internet is a magnificent resource for almost any topic imaginable. Without it, I would probably have had to spend months in a medical library to find out what I eventually learned quickly in cyberspace. And I might never have found the particular information that made such a difference in my case.
        And here is what I learned: In medicine, there are frequently alternatives that any given doctor, no matter how well trained, may not yet know about. The medical knowledge base and patterns of practice for a particular illness may vary widely from one geographic setting to another. For the layman, this can be extremely confusing. Each variation for diagnosing and treating a given disease will have its adherents and opponents. It is left to the poor, bewildered patient to navigate the information superhighway, filter out the false pathways, and make confident choices.
         Nevertheless, an active rather than a passive role can often spell the difference between invasive and noninvasive therapies, between a life with reasonable quality and one with significant physical or mental deficits, and possibly between life and death. This is why it is imperative for patients to question everything, to "take charge" of their own care.
        My first glimmer of hope came the day that I found an article on the Internet written by Drs. Bergein Overholt and Masoud Panjehpour of the Thompson Cancer Survival Center of Knoxville, Tennessee. This article, titled "Barrett's Esophagus: Photodynamic Therapy for Ablation of Dysplasia, Reduction of Specialized Mucosa and Treatment of Superficial Esophageal Cancer" (www.lumacare.com/paper5.htm), described a process (PDT) in which esophageal dysplasias, and even early cancers, were cured without surgery and allowed the patient to keep his esophagus. However, the process is not a particularly pleasant one and has the potential for serious side effects.
        Nevertheless, I could hardly contain my sense of joy. For the first time in weeks, I had hope. Here was a way to keep my esophagus and look forward to a cancer-free future. I did not care how unpleasant PDT would be, as long as I could end this nightmare without permanently altering my ability to enjoy a good meal and without exposing myself to the risks of major surgery.
        However, my joy was not destined to last. Several gastroenterologists that I consulted at well-known teaching centers informed me that PDT for Barrett's is still experimental. There is a growing consensus that the procedure holds much promise, but I was advised to proceed carefully. I was also informed that esophagectomy is still the standard of care. Definitely not what I wanted to hear.

Hope in seattle

        Finally, almost by accident, I stumbled upon the Web site for the Seattle Barrett's Esophagus Program of the Fred Hutchinson Cancer Research Center at the University of Washington (UW) (www.fhcrc.org/barretts).
        I read that this program "uses a multidisciplinary approach that includes: 1) an experienced clinical team that has been caring for patients with Barrett's Esophagus since 1983; 2) a laboratory team that is investigating the genetic and cell cycle abnormalities that lead to cancer in Barrett's Esophagus; 3) epidemiologists who are investigating the environmental risk factors that may cause Barrett's Esophagus and cancer; and 4) dietary intervention researchers." There is also an impressive listing, at this site, of sixteen members of the Barrett's Esophagus research team, including a brief synopsis of the outstanding credentials of each of these researchers.
        The team is being led by Dr. Brian Reid, a gastroenterologist with a Ph.D. in genetics whose goal is to "identify genetic markers that will allow for the early identification of patients at an increased risk of developing esophageal cancer."
        There is also a list of selected publications about Barrett's Esophagus. For the most part, this three-page bibliography includes science articles for a primarily clinical readership.
        However, there are also about a dozen references to some general-readership articles, and at the very bottom of the list is the following reference: Bloom, Victor, M.D., "How I Avoided Life-Threatening Surgery: One Patient's Experience After Being Told That He Had High-Grade Dysplasia in Barrett's Esophagus" (Medical Economics, Dec. 1995, 47).
        You can imagine how excited I felt when I spotted this reference. This was one article I had to read before making any irreversible decisions. In it, Dr. Bloom explains how he felt there had to be less traumatic alternatives to having surgery. Learning about the Seattle Barrett's Esophagus Program, he promptly rushed off to Washington. There he had thirty biopsies taken of his esophagus, as well as genetic studies. After ten agonizing days of waiting, according to Bloom's article, he received his report: no dysplasia, no cancer.
        Could history repeat itself? Could the Seattle Barrett's Esophagus Program do the same for me that it did for Bloom? After a long phone conversation with Dr. Brian Reid, the program director, I was hooked. He quickly identified me as someone quaking with terror, but he knew exactly how to ease my fears. Their experience in Seattle, he told me, was that the vast majority of people with Barrett's do not get cancer. A surprising number of patients coming to them with high-grade dysplasia turn out to have been too aggressively diagnosed. It was at least possible that I would fall into this group.
        There are several speculative explanations for the vanishing dysplasias, but whatever the reason, some very frightened patients facing complete and total esophagectomy have been granted a new lease on life in Seattle. I prayed that I could follow in their footsteps.
        While there were no guarantees, of course, Dr. Reid strongly recommended that I come to Seattle, and I accepted his invitation. As I did so, I was struck by the speed with which the Internet, despite some of its annoying limitations, enabled me to move from initial diagnosis (September 10) to discovering, arranging, and visiting the Seattle program (September 25), a total of two weeks. There is no way that this could have happened so quickly even as recently as five years ago.
        In Seattle, Dr. Patricia Blount, a senior member of their team, took forty-four biopsies (ouch) from my esophagus. Three horrible weeks followed, during which pathology reviewed each one carefully and I sweated out the wait for the report. Raging pessimism alternated with galloping optimism.
        At last it came. Here is what Dr. Blount's letter to my local doctors said: "These forty-four biopsies were read as in the negative to indefinite range for dysplasia. Based on these biopsy results, Mr. Tell would be in a low-risk category for the development of esophageal cancer."
        It was over ... or was it? Dr. Blount's letter continued, "Because sampling error is always a possibility, no matter how many biopsies you take, especially if the focus of high-grade dysplasia is very small, we have recommended to Mr. Tell that he return to the University of Washington Medical Center in six months for repeat endoscopic biopsies of his Barrett's segment to again exclude high-grade dysplasia."

Good odds

        As I write this, almost two years have passed since my first visit to Seattle, and I have returned regularly for additional endoscopies. So far, I have had approximately 130 biopsies taken from my esophagus without any indication of cancer. There has, however, been one additional cell diagnosed with high-grade dysplasia. Thus, about 98.5 percent of all my biopsies have been normal, while about 1.5 percent have signaled danger. Pretty good odds, but still serious enough a risk for the doctors at UW to keep me coming back for frequent surveillance.
        And so, one learns to live with uncertainty. This is a familiar companion to all those in high-risk categories for all kinds of illnesses and conditions. This level of ambiguity, however, is a new experience for me; and I can't say that I like it.
        On the other hand, I consider myself a lucky man. The odds still appear to be in my favor. And so far, I have been able to hang on to my esophagus. Whatever the future holds, this is a better place to be than where I was at the beginning of this adventure.
        I recall saying to Dr. Blount at some point, "Thank God I found you on the Internet? If I hadn't, I probably would have had my throat cut." Her response: "Most patients still go that route. In some cases, it is the correct decision because a subset of patients with high-grade dysplasia will go on to get cancer. However, many patients who have their esophagus surgically removed would have never developed cancer.
        "Our project is trying to find the risk determinants so that never again will anyone have their esophagus removed unnecessarily, and so that the truly high risk individuals can receive the appropriate therapy early enough to make a difference."
        There is also the anxiety issue. Some patients end up choosing surgery for psychological reasons. Rather than live with the fear of developing a hideous cancer, the mortality and morbidity risks of surgery seem a lesser evil than do years of surveillance and uncertainty.
        Which leads us to an ethical issue for society to ponder. Recent advances in medical technology have enabled doctors to more accurately identify people at risk of getting many terrible illnesses. If these procedures had not become available, some folks who can now be cured would have died.
        On the other hand, most people with undetected risk factors would never even have known that they were at risk, and many of these would never have developed life-threatening disease--thus being spared the anguish, worry, invasive procedures, drug side effects, and expense that are the companions of such knowledge. Are they better off knowing? I don't have the answer.
        The media are full of such medical dilemmas. Which treatment for prostate cancer is least likely to cause incontinence, impotence, or both? Or should it be treated with "watchful neglect," doing nothing? Was it even helpful to have the Prostate Specific Antigen test done, with its occasional misleading results? Should breast cancer be dealt with by mastectomy or lumpectomy, and if there is a strong family history, should the healthy other breast be removed too, as a precaution? And of personal interest to me, when should someone's esophagus be surgically removed? The list of such paradoxes grows longer day by day.
        A doctor friend, the head pathologist at a local hospital, said, "Bob, sometimes we doctors know too much for our own good. Based upon the reputation of the pathologist who read your original slide, I would have rushed into surgery. I would not have thought to seek another opinion, or even conceived that a program like Seattle's was available.
        "You did the right thing," he continued. "No question about that ... and be thankful that your lack of medical expertise led you to do the research that most doctors would have skipped."
        And that's the whole point!