On “helping” that is anything but

Cancer is a bitch. Depending upon what organ is involved and what kind of cancer it is, it can be incredibly hard to cure. All too often, it is incurable, particularly when it involves the brain, pancreas, esophagus, or other organs. People wonder why, after over 40 years of a “war on cancer,” we don’t have better treatments and more cures. As I’ve explained before, it’s because cancer is incredibly complex, and cancer cells have incredibly messed-up genomes. Even worse, cancer uses evolution against any efforts to treat it, producing such marked heterogeneity among tumor cells that not only are different cancers very different but individual cells within a single cancer cell can be very different. That’s an incredibly powerful weapon. Still, there has been progress, and some have even developed strategies to try to turn evolution against cancer.

Unfortunately, many of the treatments that work and result in actual long term survival in cancer patients (more commonly called remissions or, even more colloquially, cures, although oncologists don’t like to use that latter word) involve surgery or toxic therapies such as chemotherapy or radiation. Indeed, most solid tumors that are curable are cured with surgery, and the chemotherapy and radiation are usually the “icing on the cake” that decreases the risk of recurrence, while most “liquid” tumors (like leukemias) are treated primarily with chemotherapy. These treatments are difficult, and too frequently they produce significant morbidity. On the other hand, we don’t (yet) know of anything else that works. Newer targeted therapies, with a few exceptions, have been relatively disappointing. Don’t get me wrong; they do work very well with much less toxicity for selected tumors, but it’s hard to conclude that they’ve lived up to the sometimes excessive hype.

Because cancer, other than early stage solid cancers that can be completely extirpated with surgery, are so hard to cure, it’s always interesting to see what happens when a believer in alternative medicine is unfortunate enough to be stricken with cancer. After all, real oncologists understand what an intractable and devious foe cancer can be. All too often, to the alternative cancer quack practitioner, curing cancer is a matter of readjusting that life energy, giving that herb, or cleansing those toxins (all too often involving various solutions poured into the rectum and colon). It’s all so easy, and such high success rates are claimed that you’d think that alt-med practitioners always use alternative cancer treatments. True, sometimes they do, with predictably disastrous results, but more often the stories I see resemble this story by Joanna Montgomery, a blogger who is battling cancer right now, entitled Keep Your Cures Off My Cancer. In it, she first links to the article describing her diagnosis, which is as heart-rending a cancer story as I’ve ever heard, in which she discovered her diagnosis after the birth of her daughter:

“It’s cancer,” she said, “I’m so sorry.”

It seemed that the mass discovered on my left Fallopian tube during the emergency C-section that brought our little girl into the world the previous week was malignant. My doctor hadn’t been worried about it at the time, so we hadn’t been worried either. Well, now we were worried.

Which led to:

Right before Christmas, I had a radical hysterectomy to remove all of my reproductive organs, plus some exploratory surgery and biopsies. At the time of the surgery, I was outfitted with an intraperitoneal (IP) port so that the chemotherapy I would need to could go directly into my abdomen.

The surgery revealed that the cancer on my left Fallopian tube had spread significantly and metastasized to other organs, including my right Fallopian tube, both ovaries, my uterus, my colon, and parts of my abdomen. It was staged as Stage IIIC. That was the bad news. The good news was that my oncologist had successfully removed about 98 percent of the cancer. And that the hard core chemotherapy regimen I’d be undergoing was designed to eradicate the remaining 2 percent.

Given the type and staging of my cancer, I was given a 50 percent survival rate.

No doubt a 50% survival rate is alarming to a young woman like Joanna Montgomery, particularly one who has just given birth to a new child. One can only imagine the terror she felt. So it is not surprising that she elected to do all that all she could do to live, to be there for her daughter, and that involved radical surgery, chemotherapy, and, apparently, intraperitoneal chemotherapy, which involves bathing the intraabdominal organs in chemotherapy to try to kill off any deposits that might be left behind on the peritoneal surfaces (the membrane lining the intraabdominal organs), which is how this type of cancer spreads. Indeed, in her post, she notes:

I’m long-time believer and practitioner of alternative medicine, yet when I learned I had cancer, I couldn’t get hooked up to the chemotherapy drip fast enough.

This is, of course, an eminently sensible reaction to a diagnosis of a cancer that has an approximately 50% chance of taking your life. One should also remember that, almost certainly, that 50% chance was with chemotherapy. Without chemotherapy her odds of surviving were likely less than 50-50. Be that as it may, Montgomery recognized immediately that the woo wouldn’t cure her, but that the surgery and the chemotherapy could. Nothing in life in general or medicine in particular can ever be a 100% guarantee except that we all will die someday of something, but Montgomery listened to doctors practicing science-based medicine and maximized her odds. Indeed, she even underwent BRCA testing, found out that she harbors a BRCA1 mutation that vastly increases her risk of breast and ovarian cancer, and elected to undergo a prophylactic bilateral mastectomy, just as we learned a couple of weeks ago that Angelina Jolie did.

Of course, Montgomery also pursued various alternative therapies as well, her rationale being “if it can’t hurt me and has been reported to shrink tumors and make cancer disappear, what do I have to lose?” Of course, of the alternative therapies Montgomery discusses, none of them really do have convincing evidence that they can “make cancer disappear,” except in a dish and maybe in animal models. And it sounds as though she’s done it all: consuming what she refers to as “rivers” of green tea; drinking frankincense oil; using Himalayan sea salt; juicing; eliminating processed sugars, meat, and processed foods from her diet; purchasing an “elaborate alkaline water system from Japan” for her home. As I’ve discussed time and time again, water alkalinization as a treatment for cancer is pure quackery, as are alkalinizing diets. Nor can any of the rest of these modalities cure cancer. Fortunately, they are probably harmless or, as Douglas Adams referred to Earth, “Mostly harmless.”

It might surprise readers to learn that when it comes to patients wanting to use alternative medicine to treat their cancer, I take a very practical approach to the problem. I will tell them what I think about it and, if interested, lay out the reasoning why. I might even tell them that I think they’re wasting their time and money. But then, if they insist on using it as well, I try to make sure that they are undergoing conventional, science-based treatment and tell them that they can use whatever they like alongside it as long as (1) I know what it is and (2) it doesn’t interfere with the science-based treatments they are undergoing. The reason is simple. I want the patient to live, and as long as that patient doesn’t abandon conventional science-based cancer treatment in favor of quackery, the patient’s chance at survival has been maximized, assuming condition #2 is met. I might be caustic, funny, and even contemptuous on this blog, and that’s fine. In the “real world,” however, how I behave has real consequences, and I don’t want those consequences to be to drive a patient away from the treatment that will help her. The blog is the blog, and I pull no punches here, but I try never to attack a cancer patient for her choices, no matter how horrific the quackery I am deconstructing is. Real life is real life. The two must be distinguished.

Regular readers know that over the last year and a half I’ve spent a lot of verbiage dissecting the claims of a doctor named Stanislaw Burzynski, who claims to have results far superior to that of conventional medicine using substances that he originally isolated from urine and dubbed “antineoplastons.” All you have to do is to type that name in the search box of this blog, and you’ll find numerous posts about his claims and why they do not stand up to scrutiny. Burzynski has a contingent of defenders who have targeted skeptics like me for special abuse, up to and including harassing me at work by calling my university to complain about my online verbiage critical of Burzynski and implying that I am somehow doing something wrong. (My university quickly realized that I was not.) One thing these Burzynski defenders have claimed is that “skeptics” have been abusive towards cancer patients who go to Burzynski. I’ve never done so and strive never to do so, as I’ve described before, because I’ve dedicated my career to treating cancer patients and would never knowingly do anything like that. Nor have I ever seen any skeptic do worse than skirt the edge of what I consider to be propriety, and when I have seen this I have called such skeptics out.

What I’ve never seen a skeptic do is what Montgomery describes enduring, which is the very subject of her post:

Being a target for criticism comes with a blogger’s territory. I learned pretty quickly that I have to have thick skin if I am to keep writing publicly about my personal life. However, I admit I was surprised in the beginning to experience open hostility from strangers who disagreed — vehemently — with my health care choices. Individuals who had no qualms (anonymously) blasting someone actively dealing with cancer.

Some of the loving comments I received included gems like these:

“Have the courage to REFUSE chemo and you will have a better chance of living to 100.”

“It is NOT a cancer ‘battle’ when you put all four paws in the air and blindly and stupidly trust the cancer industry.”

“Chemo is an over-priced highly ineffective chemical attack on your immune system which if it was healthy to BEGIN with you would have never gotten cancer at all.”

“When you’re ready to stop poisoning yourself, the real, natural cure is out there.”

“If you were evolved enough to recognize the truth about the pharmaceutical industry, you wouldn’t be risking leaving your daughter without a mother.”

“You are part of the problem, a pawn for the cancer machine.”

Notice the similarity to antivaccine rhetoric directed against those who choose to vaccinate. People who choose conventional therapy are “sheeple,” “stupid,” “deluded,” or somehow in the thrall of nefarious forces such as the pharmaceutical industry, which keep them from “natural” cures. Because they view proponents of science-based medicine as deluded and/or downright evil, any tactics are considered fair game to try to lure “apostates” back to the fold of believers and, if they do not return, then they are shunned (or at least denigrated). Indeed, they often show no compassion for patients suffering through cancer while lambasting those of us who treat these patients and try to advance the standard of care as being without compassion. It’s a feature, not a bug.

It’s impossible to write a post like this without pointing out the flip side of this problem: How does one react when a loved one is pursuing quackery to treat a potentially curable cancer? Looking at how Montgomery reacts to being told she is part of the sheeple duped by the nefarious forces of big pharma tells you the pitfall of trying to persuade someone who has taken a disastrously wrong path with respect to quackery. That person will react the same way to being told he has been fooled by the quack and chosen a treatment that can’t hurt him. There is the problem. Even though you’re in the right advocating science-based medicine and the supporters of quackery who told Montgomery she was a fool for accepting standard-of-care treatment, the reaction to being told either of these two things is the same: Defensiveness. Overcoming that defensiveness on the part of someone who wants to pursue alternative therapy might involve the reluctant toleration of an uneasy “integration” of quackery and science-based medicine.