Cancer Complementary and alternative medicine Medicine

The beginning of another “alternative” medicine cancer testimonial

If there’s one thing I really detest, it’s cancer quackery. Indeed, one of the very earliest posts on this blog was about this very topic, and applying science, skepticism, and critical thinking to extraordinary claims of cancer cures has remained a major theme of this blog ever since. Shortly after that, I described how, because of the variable course of cancer and the fact that many cancers are cured with surgery alone, “testimonials” for cancer quackery can sound very convincing. It’s a topic I’ve covered several times over the three and a half year history of this blog. Whenever a high profile testimonial claiming to be evidence for the efficacy of this woo or other, I have a hard time resisting looking a bit more closely at the clinical situation (at least, as much as can be gleaned from the press reports or the testimonial itself) to see if the testimonial really is evidence for what it claims to be evidence for. It almost always isn’t, although sometimes (often intentionally, I suspect) there isn’t enough information to make a call one way or the other.

Here we go again. It’s time to tackle another one, this time from a most unexpected source.

Unfortunately, the source of this particular testimonial is, of all things, ABC News, which has given a woman named Joyce (who will not give her last name) prominent space on its blog to tell her story entitled Fighting Cancer, Chemo-Free. It’s just like all the others, only writ large on a major news outlet’s website. Like all the others, it starts out with the diagnosis:

“You have elevated lymphocytes,” the voice on the other end informed me. “You are being referred to a hematologist/oncologist.”

Surprisingly, the call was not from the doctor, but an assistant in the medical center. This was the beginning of diagnosing my disease, and I had no idea what it all meant at the time and what it would lead to, either.

I was struck by how routine it was for the assistant to convey the news to me — more routine than I would have imagined. That, plus the fact that I was not dealing directly with the doctor.

Like the subjects of so many alt-med testimonials, Joyce emphasizes the routine, seemingly depersonalized manner (from the patient’s point of view, at least) in which her diagnosis was relayed to her and she was dealt with by the “conventional” medical system. I sometimes wonder whether, if we as “conventional” cancer doctors could reliably eliminate that feeling of being a number or diagnosis and make patients feel like a human being, we could by so doing also eliminate much of the motivation that drives women like Joyce away from scientific medicine and into the arms of woo-meisters. At least, we could probably decrease the number of patients who succumb to the blandishments of quacks, although I realize that there are some people who wil never be swayed.

And driven into the arms of woo-meisters is what Joyce ultimately was. But first, she describes how “crunchy” her outlook was with regard to “natural” and “organic” living. Then she describes what kind of cancer she has:

After returning home from Arizona, grateful for the visit, I was scheduled within the week for a bone marrow biopsy. To many, this would be a very painful procedure, but five children and a strong spirit made it very bearable. Next was a CAT scan and a PET scan, and additional blood work, all of which took a month to complete due to scheduling. Then came the visit to the oncologist for the results.

Arriving at the office from work, I was quite anxious but spent time praying that the results would be favorable. After about 30 minutes in the room, a different doctor came in who works with my oncologist. At first look, she said, “You are going to be fine, I don’t really see anything to be concerned about.” I asked her, “what about the PET scan results?” Well, after the second review, she reported lymphoma. Actually, marginal zone lymphoma. Marginal sounded pretty good, like not the whole thing! She explained a bit about the type of cancer I had, a “waxing and waning” cancer, not curable and not necessarily needing treatment. Didn’t sound horrible … prayers answered? Not sure and not sure who to ask.

It turns out that marginal zone lymphoma is about the best possible cancer to become the subject of an alt-med testimonial. It has all the elements that allow for the appearance of efficacy for whatever woo is chosen. I’ll get to those elements in a moment. First, you should be aware that marginal cell lymphoma is an uncommon variety of B cell lymphoma that arises in the marginal zone of lymphatic tissue. It arises from three main sources:

  • Extranodal marginal zone B-cell lymphoma of mucosa-associated lymphatic tissue (MALT) type. These lymphomas start in organs other than the lymph nodes and are the most common type. Most mucosa-associated lymphoid tissue (MALT) lymphomas arise in the stomach, although they can also arise in the lung, skin, thyroid, salivary glands, and tissues surrounding the eye. Usually these lymphomas are confined to the area where they arise and are not widespread.
  • Nodal marginal zone B-cell lymphoma. This is a rare form of lymphoma diagnosed primarily in older women. It involves lymph nodes are involved, but tumor cells can also sometimes be found in the bone marrow.
  • Splenic marginal zone lymphoma. This, too, is a rare lymphoma. It is found in the spleen (hence the name) and bone marrow.

Based on Joyce’s description, she most likely has nodal marginal zone B-cell lymphoma, although I could be wrong about this. The fact that it’s in her bone marrow leaves out a MALT tumor. There’s also no mention of an enlarged spleen, which is virtually always present for the splenic variety of this tumor.

More importantly, there are several reasons why marginal zone lymphoma is perfect for an alt-med testimonial of Joyce’s variety. First, it’s a very indolent tumor. Patients can do quite well with it for long periods of time. Symptoms may wax and wane, and the tumor may also wax and wane, although the general course is slow progression. Indeed, often the treatment is nothing more than observation, with treatment with low-intensity chemotherapy held in reserve until and if the tumor progresses. Overall, this sort of lymphoma is generally treated in a manner similar to follicular lymphoma, which is often not treated until it starts to cause symptoms or organ abnormalities. One other thing to be aware of is that marginal zone lymphomas can either recur or transform into diffuse large cell B lymphomas, a more aggressive lymphoma that requires more aggressive treatment.

When Joyce’s tumor apparently progressed, chemotherapy was recommended. If you’ve read this sort of testimonial before, you know what’s coming next:

Over the next days, I prayed and asked for wisdom as I faced the likelihood of this path of treatment. Being one who hasn’t taken even a Motrin for many, many years, how could I possibly undergo something like this? Based on everything I knew from my self-study of nutrition and wellness, this was not an option.

Of course not. It never is for believers like Joyce. Unfortunately, this little thing we call reality has a funny way of intervening, whether we like it or not. It would be wonderful if it were otherwise, but it’s not. Nobody likes the prospect of having to undergo chemotherapy, but declaring such prospect “not an option” when you have cancer is nothing more than wishful thinking. Unfortunately, an attentive naturopath and wishful thinking can go a long way:

My meeting with this doctor began with an hour consultation where he questioned me on everything: symptoms, personal and family history, places where I lived, toxin exposure, stressful events, et cetera. He recorded every bit of information. I was absolutely fascinated with his approach — his questions, the way he was taking in the information and then immediately creating a beginning protocol for healing. Wow, quite different from “we don’t know how people get lymphoma, waxing and waning type of cancer, no real cure, we’ll wait and see.”

The problem is, however, that that’s simple honesty. We physicians may understand a lot, but we don’t understand enough about exactly how cancer develops to say with confidence that we know why cancer occurs or exactly what causes it. There are usually multiple potential causes. In addition, medical ethics demands that we be honest in telling patients about the uncertainty in our predicted treatment outcomes. Woo-meisters like naturopaths labor under no such limitation on what they tell patients. After all, they tend to believe fervently that they know why cancer forms. They can tell patients that it’s “acidification,” “toxins,” or other catch-all “causes” of cancer and do it with confidence and utter sincerity. They can also tell patients with confidence and utter sincerity that they can offer patients a treatment that is “non-toxic” and just as effective as chemotherapy. Unfortunately, sincerity aside, their explanations for what they propose to do are generally simple, reasonable-sounding–and almost always utterly wrong. But they sure do sound convincing to patients who don’t understand understand science and/or who are predisposed to belief that “natural” must be better.

Patients like Joyce.

Indeed, among comment after credulous comment praising Joyce for being “brave” and having chosen “wisely,” one commenter named Eric actually nailed the true situation it is as well or better than I ever could:

Most telling is the statement by the naturopath that he can definitely improve or cure the patient, which she finds much more acceptable than the uncertain prognosis offered by the mainstream physician. This is the means by which quacks flourish. Unfortunately, in the real world lymphoma does not have some universal cause like poor nutrition and while medical therapy is sometimes quite effective, low-grade lymphomas often don’t respond well, which is why “wait and see” is preferable (many people live a long time with their disease before treatment is required).

And of course, diseases that “come and go” with variable symptoms are tailor-made for quacks – they claim credit for the naturally-occurring remissions, and when the patient’s condition worsens it’s his/her fault for not seeking the quack’s help sooner or for having sought conventional treatment first.

Patients, too, who receive both “conventional” and “alternative” therapies for cancer often give credit to the “alternative” therapy when they do well or blame the “conventional therapy” when they do not. It’s a “heads-I-win-tails-you-lose” prospect for “alternative” medicine practitioners.

I wish Joyce nothing but the best. I really do. In fact, that’s why I hope that she will figure out before it’s to late that the path she has chosen is not in her best interest and will ultimately result in the deterioration of her health sooner than it needs to deteriorate. However, my wishing that Joyce will see the light does not absolve ABC. I am highly disturbed that ABC News would give Joyce and her “journey” a pulpit in the form of a blog from which to spread her message of faith in naturopathy with statements like this:

I’m a big believer in the possibility that alternative medicine provides for treating any type of illness and for prevention. And that is what I’ll focus on in this blog, going forward. I hope it helps any of you who are reading it.

The only people Joyce’s blog will help, I’m afraid, are cancer quacks, particularly given the large number of alt-med testimonials and words of encouragement posted in the comment section relative to the few skeptical comments warning Joyce about the course she is on. It is certain that Joyce’s blog will not help any cancer patients unless bad things end up happening to Joyce and she realizes her mistake too late, which would be tragic for her and any patients who may have listened to her in the meantime. In fact, if Joyce’s blog persuades any patients unfortunate enough not to have a tumor as indolent as hers to abandon conventional therapy and pursue quackery, Joyce could well, as a promoter of quackery, lead cancer patients to their deaths. I realize she doesn’t see it that way, but that’s the way I see it. Also, the longer she keeps it up, the more likely her glowing testimonial is to lead a cancer patient to abandon effective therapy to his detriment. Fortunately for Joyce but unfortunately for such patients, because of the very nature of her disease Joyce is likely to be around quite a while regardless of what she ultimately chooses to do.

What’s worst of all, though, is that ABC gave her the forum through which to do it. If any patients die due to foregoing effective therapy based on Joyce’s story, ABC News will share in the blame. Joyce’s promotion of naturopathy is understandable in that she’s at present a believer, but ABC News should know better than to give a believer in quackery a regular soapbox. That’s also the way I see it.

By Orac

Orac is the nom de blog of a humble surgeon/scientist who has an ego just big enough to delude himself that someone, somewhere might actually give a rodent's posterior about his copious verbal meanderings, but just barely small enough to admit to himself that few probably will. That surgeon is otherwise known as David Gorski.

That this particular surgeon has chosen his nom de blog based on a rather cranky and arrogant computer shaped like a clear box of blinking lights that he originally encountered when he became a fan of a 35 year old British SF television show whose special effects were renowned for their BBC/Doctor Who-style low budget look, but whose stories nonetheless resulted in some of the best, most innovative science fiction ever televised, should tell you nearly all that you need to know about Orac. (That, and the length of the preceding sentence.)

DISCLAIMER:: The various written meanderings here are the opinions of Orac and Orac alone, written on his own time. They should never be construed as representing the opinions of any other person or entity, especially Orac's cancer center, department of surgery, medical school, or university. Also note that Orac is nonpartisan; he is more than willing to criticize the statements of anyone, regardless of of political leanings, if that anyone advocates pseudoscience or quackery. Finally, medical commentary is not to be construed in any way as medical advice.

To contact Orac: [email protected]

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