Editor’s Note: Having pivoted immediately (and dizzyingly) from attending NECSS and participating with John Snyder, Kimball Atwood, and Steve Novella in a panel on the infiltration of quackery into academia to heading down to Washington, DC for the AACR meeting, I’ve neglected my SBM duties a bit this week. After a packed day of talks at the AACR meeting followed by spending an evening with a friend whom I haven’t seen for a long time (complete with a trip to The Brickskeller), there’s–gasp!–no new material today. Because for some reason a decision was apparently made to cut our panel very short in order to get the conference back on schedule, we were unable to answer anywhere near as many questions from the audience as we had originally hoped, I was thinking of doing a post trying to answer a couple of the questions asked by audience members who came up to me after the panel terminated prematurely, because one of them was a particularly dicey situation. Maybe later this week. In the meantime, here’s something that I wrote about a year ago, which I tweaked a bit. It’s a very serious topic, but I think it appropriate because it discusses exactly what science-based medicine tries to prevent using evidence and what “alternative medicine” claims it can prevent based on no evidence.
I’ve written before about the Daniel Hauser case, a 13 year old boy who last year refused chemotherapy for his Hodgkin’s lymphoma, necessitating the involvement of the legal system. Cases like that of Daniel Hauser reprsent supreme “teachable” moments that–fortunately–don’t come along that often. The antivaccine movement, for instance, will be with us always (or at least, I fear, as long as I still walk this earth and beyond), but cases like that of Daniel Hauser tend to pop up only once every couple of years or even less. As tragic as they are, they always bring up so many issues that I have a hard time leaving them alone.
This time around, I wanted to touch on an issue that has come up frequently in the discussions of this case, and that’s the issue of chemotherapy. Specifically, it’s the issue of how horrible chemotherapy can be. Again, make no mistake about it, chemotherapy can be rough. Very rough. But what is often forgotten is that it can also be life-saving, particularly in the case of hematologic malignancies, where it is the primary therapy. What is also often forgotten or intentionally ignored by promoters of unscientific medicine is that doctors don’t use chemotherapy because they have some perverted love of “torturing” patients, because they’re in the pockets of big pharma and looking for cash, or because they are too lazy to find another way. They do it because, at least right now, it’s the best therapy science-based medicine has to offer, and in the case of Hodgkin’s lymphoma, for example, it’s life-saving. You can be sure that if a less harsh way were found to achieve the same results, physicians would jump all over it. Indeed, a major focuse of oncology research these days is to find less brutal regimens and improve the quality of life of cancer patients while still giving them the best shot at survival.
Yes, chemotherapy can make you feel nauseated and make you throw up. It can make your hair fall out. It can temporarily depress the immune system. It can cause bleeding complications, such as GI bleeding. It can cause kidney damage. It can cause heart damage. It can cause lung damage. It can cause nerve damage. It can make you lose weight. It can even result in your death from complications. In short, it is not something to be used lightly. Unfortunately, the disease it’s meant to fight is a formidable foe indeed. It is your own cells, and all too often the difference between the toxicity of chemotherapy against the cancer and against normal cells is not that large.
But what does cancer do? How do cancer patients die? They suffer and die in protean ways. Cancer can do everything chemotherapy can do (with the exception of hair loss) and more. I’ve seen more patients than I care to know suffer and die from cancer. I’ve seen family members suffer and die from cancer, most recently my mother-in-law last year.
One of the most frequent claims of cancer patients who opt for quackery instead of chemotherapy and effective science-based therapies is that they want to remain healthy. Some, as Abraham Cherrix did, state that, even if they end up dying, they want to “die healthy.” It’s a dangerous delusion. There is nothing “healthy” about dying from cancer. Dying from cancer is anything but “healthy.” But it is perfectly natural, as natural (or even more so) than the herbal concoctions that so many alt-med believers put their faith into. But what does dying from untreated cancer mean? What happens? What does it involve?
Dying from untreated cancer can mean unrelenting pain that leaves you the choice of being drugged up with narcotics or being in agony.
Dying from untreated cancer can mean unrelenting vomiting from a bowel obstruction. It can mean having a nasogastric tube to drain your digestive juices and prevent you from throwing up. Alternatively, it can mean having to have a tube sticking out of your stomach to drain its fluids.
Dying from untreated cancer can mean bleeding because you don’t have enough platelets to clot. The bleeding can come in many forms. It can be bleeding into the brain, in essence a hemorrhagic stroke. It can mean bleeding from the rectum or vomiting blood incessantly. And, because so many transfusions are all too often necessary, immune reactions can chew up new platelets as fast as they’re infused. Yes, paradoxically, even when a cancer patient’s immune system is suppressed in late stage cancer, frequently it does work against the one thing you don’t want it to: Transfusions of blood products.
Dying from untreated cancer can mean horrific cachexia. Think Nazi concentration camp survivor. think starving Africans. Think famine. Think having cheeks so sunken that your face looks like the skull underlying it.
Dying from untreated cancer can mean your lungs progressively filling with fluid from tumor infiltration. Think choking on your own secretions. Think a progressive shortness of breath. Think an unrelenting feeling of suffocation but with no possibility of relief ever.
Dying from cancer can mean having your belly fill with ascites fluid due to a liver chock full of tumor.
Dying from cancer can mean a progressive decline in mental function due to brain metastases.
Dying from cancer can mean so many other horrific things happening to you that they are way to numerous to include a comprehensive list in a blog post, even a post by a blogger as regularly logorrheic as I am.
Modern medicine can alleviate many of the symptoms people with terminal cancer suffer, but all too often it can’t reverse the disease process. However, the relief of these symptoms requires that the patient actually accept treatment. Hospice can minimize such symptoms, often for significant periods of time. However, even with the very best hospice care, there is nothing “healthy” or pleasant about dying from cancer. It means a loss of control. It can mean being too weak to get up by yourself, to feed yourself, to go to the bathroom yourself, to bathe yourself, or do do much other than lie in your bed and wait for the end. Without such treatment, a patient who chooses quackery over effective curative or palliative therapy dooms himself to a painful and unpleasant death. He in effect dooms himself to the sorts of ends untreated cancer patients suffered hundreds of years ago, before there was effective therapy. It doesn’t have to be this way, but the seductive promise of a cure without pain, without hair falling out, without nausea lures cancer patients to havens of quackery in Tijuana or to flee from authorities trying to see that a child obtains potentially life-saving treatment, all because of a magnified fear of chemotherapy, all because of the propaganda that paints chemotherapy as “poison,” radiation as “burning,” and surgery as “slashing.”
Here’s the dirty little secret behind “alternative cancer cure” (ACC) promises. They are seductive because it is true that cancer patients who stop their chemotherapy will feel better than they did when undergoing chemotherapy. Of course they do, at least for a while! Often what happens, as in Daniel Hauser’s case, is that the tumor shrinks, and, once the chemotherapy course is done, the patient does feel better because the tumor is no longer causing B symptoms or compressing lungs and making him short of breath, and other symptoms are also relieved. It is also true that more chemotherapy will make the patient feel lousy again for a time. Unfortunately, in the case of Hodgkin’s lymphoma, the additional chemotherapy is necessary to maximize the chance of cure. Hodgkin’s disease frequently relapses without the additional courses of chemotherapy. Science and clinical trials have told us that. Daniel Hauser is living proof, an anecdote that is consistent with what science tells us.
In other words, the promise of ACCs is a lie. They promise that cancer patients will always feel the way they do after the first course of chemotherapy is over and they have recovered or the way they feel before the tumor has grown beyond what can be cured. They are either deluded or lying. That’s because cancer doesn’t give up. It’s like the Terminator. It can’t be bargained with. It can’t be reasoned with. It doesn’t feel pity, or remorse, or fear. And, if it is not treated, it absolutely will not stop, ever, until the patient is dead. And it rarely will be a pretty end. There’s a case to be made that it isn’t worth they symptoms to undergo chemotherapy when it has a very small chance of success. Such a judgment is up to the patient, based on his or her values and an accurate knowledge of the risks and benefits, which we as science-based physicians must provide them. However, all too often, by foregoing effective palliation, patients who choose ACCs condemn themselves to an end far more brutal than is necessary even if their cancer is terminal when diagnosed, and patients whose cancer is not terminal when diagnosed give up their one best shot at life.