New to Cancer Ninja? Click here to start at the beginning of Jane's story. You'll learn more about her and how she got to this point.
Around this time, Jane started hearing a lot of opinions from friends and family about what she was going through.
As you can imagine, she LOVED hearing all this advice.
A lot of what she heard could be loosely categorized as suggestions from the “complementary and alternative medicine” world, aka CAM. "Alternative medicine" generally refers to non-conventional treatments that are used in place of conventional therapies. "Complementary medicine" (also called "integrative medicine") describes non-conventional treatments which are used in conjunction with accepted Western medicine. (I have to say, I don't love the terminology around this issue, but it's hard to avoid. Even the term "Western" here makes me cringe.)
CAM treatments are a hot issue in medicine, one that elicits strong feelings from people on all sides of it. Though I try not to, I know have a bias. I was trained in western (allopathic) medicine, raised in a western society. I obviously evaluate everything through that lens.
CAM treatments generally haven’t been tested in a rigorous, scientific manner, so their benefits haven’t been well established. (Which is not to say that they necessarily don't have benefits, just that the benefits aren't known.) The gold standard of medical research is the “prospective randomized trial.” In it, you take a large group of patients with disease X. You randomly assign each patient to receive either treatment Y or treatment Z. Then you follow up with the patients to see which treatment worked better. Often, one of those treatments is whatever the current standard treatment for the condition is. That treatment is called “the control.” Sometimes the control is a placebo. The other treatment is a new treatment that is being tested to see if it’s as good as or better than the control.
One of the key steps of this process is the randomization. Ideally, there's a system that's truly random which assigns which treatment each patient gets. This can be flipping a coin, or perhaps a computerized random number generator. The goal is that, in the end, the groups of patients assigned to each treatment are, on average, pretty similar to each other. If it that turns out not to be the case--for example, if the average age of one group is substantially less than the average age of the other group--when you see a difference in outcomes, you'll wonder if the difference is because of the different treatments they got, or because of the difference in their ages.
Also, in an ideal world, the researchers and the patients themselves are "blinded" to which treatment they're receiving. If a patient knows he or she is getting the experimental treatment, it might affect how they think and act. If they're optimistic about the new treatment, they might sleep better at night, for example, knowing that they're getting the new drug. When the study is complete, researchers will wonder if difference between the treatment groups really came from the treatments, or because patients getting the new drug were more optimistic. Similarly, if the doctors and nurses taking care of the patients know which ones are on the new drug and which are receiving standard-of-care, it might affect how they take care of them.
Usually, the researchers are hoping that the new treatment turns out to be better than the control. We're always hoping to find something that works better than the standard-of-care. Once it's proven effective and safe, that better treatment becomes the new standard-of-care.
In an ideal world, you might imagine that EVERY medical treatment is subjected to a randomized trial to evaluate its effectiveness. There is an approach to medical decision-making called “evidence-based medicine” which seeks to make treatment decisions based on such high-quality research, and to avoid making decisions made based on lower-quality evidence (like observational studies, case reports, and conventional wisdom). However, making ALL medical decisions this way is just not realistic. For example, no one has ever done a randomized trial to prove that aspirin is more effective than placebo for the treatment of headaches. Still, few physicians doubt aspirin’s effectiveness. Similarly, in 2003, the highly respected British Medical Journal published a tongue-in-cheek analysis pointing out that no one had ever done a prospective randomized study on skydivers, where half the participants got parachutes and the other half didn't.
No one has ever done a randomized study of early stage breast cancer patients, where half the group had their breast cancers surgically removed and the other half didn’t. Yet few people would ever question the dictum that surgery is an important part of breast cancer treatment. Some argue that since many conventional treatments haven’t been subjected to that sort of scrutiny, it isn't fair to reject CAM treatments just because they haven’t been put through those sorts of trials either. One response to this is that, just as we use parachutes because it makes common sense, we remove breast tumors for the same reason.
On the other hand, the history of medicine is strewn with treatments that, at one time or another, made “common sense” and which we now regard with amusement and/or horror. Lobotomies, ingestion of mercury, bloodletting, hysterical paroxysms, being beaten with a dolphin hide (I’m not making any of these up) all, at one point, made sense.
At the same time, more and more alternative treatments are being studied. The ones that work pretty quickly stop being called “alternative medicine” and just become “medicine.” For example, melatonin supplements used to be considered an "alternative" treatment for difficulty sleeping. Then studies were done which showed that it was safe and effective. Now melatonin is considered a standard treatment for some forms of insomnia. Doubtless, at least a few of the “conventional” treatments we now give will eventually go the way of lobotomies, while more “alternative” ones will become accepted standard-of-care. Also, don’t be surprised if some currently out-of-favor treatments come back into vogue.
One more point: all treatments, alternative and conventional, cost money. In general, conventional treatments will be covered by insurance, but if you want an alternative treatment, you pay cash for it. There are unscrupulous practitioners of alternative medicine who happily take their patients’ money, while knowingly providing them nothing of value in return. There is likely a special place in hell for those who take advantage of sick and desperate people. And while taking advantage of any cancer patient is terrible, the people who make me the angriest are those who target the parents of children with cancer. Those parents are the most desperate people you will ever meet. There is literally NOTHING they won’t do to improve their children’s chances. They are easy prey for “alternative” medicine providers.
[Be aware, there are practitioners of conventional medicine (MDs and DOs) who do the same thing. What they offer is usually a medicine or procedure that actually is useful in a particular setting, but they recommend its use to patients for whom it won't be helpful, simply because they make money from it. These "doctors" are the lowest of pond scum.]