One of the more annoying duties I used to have several years ago at our cancer center was to “show the flag” at our various affiliates by attending their tumor boards. I say “annoying” not so much because the tumor boards themselves were onerous or even uninteresting but rather because traveling to them used to cut into my already limited time for research, given that these tumor boards were always scheduled on days on which I didn’t have to be in clinic or the operating room. In other words, they always took place on my research days.
One of our affiliates was a nearly an hour and a half drive away, and many of them were close to an hour away. When you add up travel time and the tumor board, that’s easily more than three hours eaten up, all too often right in the middle of the day. In actuality, though, several of the tumor boards themselves were quite good, one of which being the aforementioned one that required nearly a 90 minute drive to reach. (It helped that they served a really nice breakfast there, too, but they also have really stimulating discussion about various cancer cases.) One of the weird things about these tumor boards is that I was viewed as–and I quote–the “outside expert.” This was particularly disconcerting the first year I had the job. There I was, fresh out of fellowship, being looked up to as the “expert” by physicians, many of whom who may have been in practice for 10, 20, or even 30 years. Somehow I managed to muddle through without making too big a fool of myself. These days, years later, I almost even feel as though, for breast cancer at least, I am worthy of the appellation of “outside expert.” Experience does matter, I guess.
Maybe about three years ago, I found myself attending a tumor board at one of our affiliates that brought up issues that I do not see that often. It brought up a rather difficult issue, one that I hadn’t given as much thought to before as perhaps I should have or that I have in the years since I started blogging actively about so-called “alternative” medicine. I hadn’t been expecting anything out of the ordinary when I arrived at the hospital auditorium. As usual, I said hello to the oncologist who runs the tumor board, a private practice oncologist for whom I had considerable respect and with whom I have shared a few patients. There were some amusing technological difficulties with the computer projection of the radiological studies and pathology slides having to do with a problem moving between a Mac and a PC with the projector, and my attempt to apply my knowledge of the Macintosh in the service of helping them figure out the problem was in essence rebuffed. So, I sat down and let them figure it out on their own without my input, concentrating instead on the coffee and breakfast that was provided. (A common theme for morning tumor boards is food, in case you hadn’t guessed by now. Attendance rises in direct proportion to the quality and quantity of food.) The first two cases presented were not particularly unusual, and we discussed them in a pretty standard fashion, but the last case presented was tragic in the extreme. If you’ve been a regular reader of this blog, you may have an idea of the general parameters, but this one shocked even me. The case involved a woman in her early 30’s, who presented to a surgeon with a small palpable breast mass. Her primary care doctor had appropriately ordered a mammogram and ultrasound, which the surgeon dutifully presented. The odd thing was that the films were from 2002. The surgeon presenting explained that this woman had presented over three years prior to him for the evaluation of this mass. On mammogram, there was a mass less than 1 cm in diameter, which was confirmed by ultrasound. The edges of the mass weren’t quite smooth enough to consider it very likely benign. Consequently, the mass fell into that gray areay that we in the biz call “indeterminate,” which is basically a code word for “we don’t know if it’s cancer or not and the imaging doesn’t look sufficiently ‘benign’ for us just to follow it.” To put it even more bluntly, it needed a biopsy. The surgeon described how he dutifully did an ultrasound-guided fine needle aspiration of the small nodule.
The results? Adenocarcinoma. Breast cancer. Not much of a surprise, given the appearance on ultrasound.
Here’s where things got interesting. Apparently, this woman was a die-hard believer in “alternative medicine.” And I do mean “die hard,” as she will quite likely die very hard for her beliefs, if she has not already in the interval between this tumor board and now. She absolutely refused any surgery or treatment for her cancer. It was explained to her that a less than 1 cm tumor with no evidence of spread to the lymph nodes carried a highly favorable prognosis, with upwards of 93% long term survival with proper surgery and radiation therapy combined with adjuvant chemotherapy and/or hormonal therapy. Here was a patient surgeons love, because we have a very high probability of curing her.
This woman would have none of it. She wanted to pursue “alternative” medicine. And pursue it she did, with a vengeance. For three years, she disappeared off the radar screen.
A few weeks prior to the tumor board, she had reappeared in this surgeon’s office. In the interim, she had tried Essiac tea, homeopathy, Hoxsey therapy, the Gerson treatment, and Reiki therapy, among others, all the while visiting various “healers.” The results? If you’ve been reading here, you can guess the result.
Her tumor had progressed.
Not only had the tumor progressed, but it had progressed a lot. When the surgeon saw her again, now more than three years after her diagnosis, her tumor had grown to 5-6 cm in size. It was now stuck to the chest wall, distorting her nipple, and ulcerating through the skin in a five centimeter area of bleeding, disgusting goo. Indeed, the surgeon even showed a picture of it. In addition, she had developed easily palpable axillary lymph nodes (the lymph nodes under the arm) on physical exam and complained of bone pain strongly suggestive of metastases to the bone. Even if she did not now have metatastic disease to the bone, her chances of cure had been vastly diminished, as she had clearly moved up from a highly curable clinical Stage I to a difficult to cure clinical stage IIIC. (If she had bone metastases, she was no longer curable at all.) This patient was in serious trouble. You would think that, finally–finally–she would have realized her mistake in not having gone with surgery and conventional medicine.
You would be mistaken.
The patient still steadfastly refused all surgery, chemotherapy, and radiation. Against all evidence that the course she had chosen thus far had not resulted in the elimination of her tumor that she expected, she nonetheless insisted on continuing with various alternative medicine treatments. Against all evidence to the contrary, she continued to refuse any form of “conventional medicine.” She still believed that her ” healer” could save her life, even though she now had a large, bleeding, stinking mass in her breast stuck to her chest wall that had three years ago been a pea-sized cancer that could have easily been excised with a small surgical procedure. She was well on her way to dying in the horrific way that so many women died of this disease 100 years ago. And the cost was more than just the growth of the tumor. The woman had three small children at the time of her diagnosis. Seeing what was happening to her, her husband had finally recently filed for divorce and custody of the children, basing his claim on the fact that, due to her progressing cancer, the poor woman would soon no longer be able to care for them properly and that she had rebuffed all of his attempts to persuade her to get proper medical treatment. He was right. Hearing this tragic case, I felt myself becoming simultaneously enraged and a little bit choked up. By presenting this case, the surgeon was in essence asking for advice, and none of us really had any words of wisdom to give him. He was up against religious or quasireligious fervor, and no amount of reality would change this woman’s mind in any way. He was desperate to help her but utterly helpless in the face of her beliefs. His only hope was that she had actually come to him again. Maybe he could finally reach her.
It was at this point the discussion took a second unexpected turn.
The medical oncologist who ran this particular tumor board stood up and addressed the attendees. She emphatically said that she viewed this case as a failure of the medical system. The medical system failed, she claimed, because it had been unable to reach this woman, because this woman had not gotten psychological help to help her to see the truly self-destructive course that she was taking. I had to disagree strongly and told her so.
The discussion became considerably more animated after that, with several doctors taking issue, including me.
How, I (and others) asked, could this be a failure of the medical system when the woman was given all the information necessary to make an informed choice and chose quackery? How, we asked, can this be a failure of the medical system when the woman continued in this course despite the fact that her primary care doctor, her surgeon, and her family begged her over and over and over again to reconsider? How, we asked, can this be a failure of the medical system when the tumor’s progression was obvious to even the most casual observer, given that it now was bleeding and eroding through the skin? We pointed out that the old cliché that you can take a horse to water but you can’t make him drink applies very well to this case. The woman had been given every opportunity. She had been brought right up to the water three years ago. It was not the system’s fault that she wouldn’t take the last step and take a drink. She had been (and was at the time of the tumor board) a competent adult. (I do not know if she still is, because I do not know if she is still alive.) Unlike minors, she is perfectly free to refuse treatment or to opt for whatever treatment she wishes, no matter how blatant the quackery. There are just some people for whom no amount of counseling or discussion will persuade. Respect for patient autonomy tells us that we must not force her to undergo the appropriate treatment, no matter how much it breaks our hearts to see a young woman with three young children throw her life way.
Faced with these objections, the oncologist changed her emphasis a little, and said that, had this been her patient, she would have viewed the failure to persuade her to see reason as a personal failure. I could see this point of view somewhat, but even so she seemed to be being a bit harsh on herself. On the one hand, I could respect her point of view, in which the inability to persuade a patient not to throw her life away would have been viewed as a profound professional and personal failure as a doctor. On the other hand, not everyone can be persuaded, no matter how good a physician is. If this woman had any mental illness that was leading her down this path, it couldn’t be discerned, unless one defines failure to face reality as a mental illness. If that were the case, a large proportion of the population would have to be hospitalized, given the rampant credulity and failure to face reality about so many issues that plagues our society. Indeed, refusing to face reality seems to be part of human nature. It’s just uncommon for it to be taken to such an extreme.
I used to be very reluctant to agree with a couple of my co-bloggers when they call alternative medicine “cult” medicine, but this woman demonstrated that maybe they know something I don’t. What else could explain her extreme inability to admit what was happening to her? What else could explain her inability to recognize or admit that all the quackery she had tried up until that point had failed utterly? What else could explain her intention to pursue even more of the same? I still think of her, two or three years later. These days, I wonder if she is still alive. Chances are, her faith in “alternative” medicine killed her sometime between that tumor board and now.
The discussion ended unresolved, although most of us weren’t able to think of anything further that could have been done in 2002, nor could we think of anything that could be done then, given that the patient was still refusing any sort of non-alternative therapy. Indeed, we were rather puzzled why she came back now if she were sure that she had no intention of accepting any sort of conventional therapy. Perhaps even she didn’t know, or perhaps her coming back was a cry for help, a manifestation of a realization that she didn’t want to face that her choice was clearly not working and her health was seriously deterioriating. Whatever the case, in situations like this, no matter how frustrated and powerless we feel, all we can do as doctors is to be there, ready to help and nonjudgmental as possible–and hope that when and if the patient comes back there is still something we can do.
Published by David Gorski under General, Health Fraud