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Chemotherapy versus death from cancer

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.

Posted in: Cancer, Pharmaceuticals

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68 thoughts on “Chemotherapy versus death from cancer

  1. lkregula says:

    I think an important thing to remember is that death is not the enemy in medicine. Death is inevitable, no matter what one does. Suffering is what needs combated. Yes, chemotherapy is lifesaving but horrible; yes, alternatives do little to nothing. It’s still a choice. If a patient is fully informed on the risks of not doing chemotherapy (or any medical treatment), and they are willing to take those risks, even if the risks include certain death, that choice needs to be respected.

    When I was a teen, my dad died of cancer. We were “lucky” in that it was short- nine months from his first doctor’s visit on what was to become the subject of cancer, until his death. As much as I love him, I wish my family had been more willing to accept hospice-type help than fight so much for every day alive, and I wish he had been able to more loudly say “Enough is enough.”

    Support patients’ desire to not have chemotherapy, support their decision to not fight cancer, support their right to die, and support their desire for comfort measures, and I bet alternative cancer cures would loose a number of their clients.

  2. snoopdavidniven says:

    If you’re going to be ruthlessly realistic about cancer death without conventional treatment, you ought to be just as unsparing to what it looks like under a doctor’s care as well. When my wife died six years ago, after undergoing the maximum allowable rounds of chemo and radiation – when her oncologist informed her there was no more point to any further treatment – we got to watch her experience “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” ANYWAY. The poor dear thing was, by your lights, the ideal patient – she would have no truck with ‘quackery’, and came to rely upon her doctor with the same quasi-religious fervor that the booboisie (according to you) foolishly place in alternative practitioners. She’d believed that, so long as she was receiving treatment, she had a hope to cling to; so that when he told her ‘no more’, it was as if God Himself had washed His hands of her. Just the way she’d've felt upon learning that the coffee enemas or the ph-corrective diet or the Chinese magnets were worthless after all.

    Only last month, I lost my mother to liver cancer, ten days after her gastroenteologist misdiagnosed her with an ulcer(!). When it became obvious that her stmach pains were no ulcer, she too wanted only proper medical care in a hospital….where she was toild that nothing could be done, that she was terminal. Thereupon they starved her for two days with ice chips when she was begging for food and fluids. Why, you ask? Well, they were prepping her for more tests, you see. A second catscan….a bronchoscopy….a liver biopsy…and, oh yeah, a colonoscopy, too. Presumably that last one was just for good luck. When I asked if any of these tests could possibly result in either a different diagnosis or some kind of a treatment regimen, I was told no, she was too far gone, but that, as doctors, they were driven to find out as much about the precise nature of her cancer as possible.

    Now, maybe I’m a cynic, a crank and a Luddite all rolled up in one, but I got the distinct impression I was watching a bunch of vultures trying to shoehorn in one last billable procedure while the body was still warm, and the insurance still valid. Because they made it a habit to meet with her before visiting hours, when her family couldn’t be there to protect her interests, and tryu to get her to sign off on these wholly-unnecessary procedures anyway…. AFTER we’d stridently insisted they treat her pain and nothing else. One thing is certain: not a single procedure they proposed was going to in any way treat or palliate her “belly filled with ascites fluid due to a liver chock full of tumor”. Which she died writhing beneath, seven days after being (correctly) diagnosed.

    Incidentally, I don’t blame doctors for their patients’ cancers, nor their deaths. I know they’re doing the best they can…most of the time, anyway. I just thought you ought to tell the whole truth here: that those horrible, degrading cancer deaths people suffer without proper medical treatment? Most of the time, they suffer those exact same deaths WITH proper medical treatment.

    Go on; tell me my data sampling is faulty, my accounting of events unreliable, and my experience apocryphal. I’ve done so much crying lately, frankly I could use the laugh.

  3. windriven says:

    Prolix perhaps, but not logorrheic.

    This post begs another: an examination of the interplay of ethical and financial factors in the months leading up to end of life. There is an aphorism that holds that everybody wants to get to heaven … but nobody wants to die. Medical science can often prolong life. But that prolongation can come at considerable cost.

    In the United States we spend about 17% of GDP on healthcare. As America grays, where do we draw the line? Most everyone would agree that, say, kidney dialysis should be widely available. But what about VADs (ventricular assist devices)? Organ transplants? What role should the wishes of the patient and/or family play? How do we as a society recalibrate availability as the costs of particular therapies change? Are scarce or expensive therapies rationed based on ability to pay or probability of positive outcome or relative need or what?

    These are issues that were largely caricatured during the, ahem, healthcare debate. The right screeched ‘death panels’ and the left promised boundless healthcare for everyone and savings to boot.

    It would be interesting and instructive to read a dispassionate, science-based analysis of these issues.

  4. Anarres says:

    windriven

    As european I guess the problem is the system in the US not the medicine. Some EU NHSs are also very good but universal and cheaper.

    http://www.angelfire.com/rnb/y/universal.htm

  5. Galadriel says:

    In your “dying of cancer” list, you missed “pain so terrible nothing can relieve it, and the person can’t even speak.” My grandmother died of pancreatic cancer.

    Granted, medicine can’t cure that one yet–last I checked–but by the time my grandfather made her go see a doctor, there was nothing at all that they could do. As I understand it, there is treatment that can not just prolong your life, but also give you better quality of life for the time that remains. She didn’t seek alternative treatment, by the way; she just didn’t seek treatment at all.

    If other cancers cause pain like pancreatic cancer does, I would go to any lengths to avoid it.

  6. windriven says:

    @Anarres

    We can debate the relative merits of this delivery system or that but the underlying issues of distributing a finite resource remain regardless of which delivery system is used. European societies are, in general, graying too and the same questions will need to be addressed.

    If, say, cancer (~13% of all deaths (WHO)) could be cured but only at the cost of $1,000,000 (totally invented cost) per patient, how much would we as a people spend to cure cancer? Who would get the treatment? Who not? How would the decision be made?

  7. windriven says:

    @snoopdavidniven

    Who could read your post without feeling deep empathy? Your losses have been tragic and heartrending.

    But here we may differ: “Most of the time, they suffer those exact same deaths WITH proper medical treatment.” I would argue that ‘most’ is inaccurate, that a more correct construct would be: sometimes they suffer those exact same deaths despite proper medical treatment.

    Medical science can’t fix everything. When it can’t fix what is wrong with someone dear to us, that failure seems complete. But that does not allow us to conflate failures of an incomplete science with failures of a complete scam.

  8. snoopdavidniven on the realities of cancer treatment:

    “If you’re going to be ruthlessly realistic about cancer death without conventional treatment, you ought to be just as unsparing to what it looks like under a doctor’s care as well. … [My wife] was, by your lights, the ideal patient – she would have no truck with ‘quackery’, and came to rely upon her doctor with the same quasi-religious fervor that the booboisie (according to you) foolishly place in alternative practitioners. … [T]hose horrible, degrading cancer deaths people suffer without proper medical treatment? Most of the time, they suffer those exact same deaths WITH proper medical treatment.”

    The gap between the theory and practice is not merely disappointing, it’s offensive, dismissive, humiliating, disorienting. It plays with our sense of reality. We don’t need head games when we’re vulnerable.

    In theory, doctors know the limitations of what they can offer and communicate effectively what they can and cannot do. As laypeople we grasp this concept easily. We expect that our doctors understand it much more profoundly: it’s their job. They should know it better than we do.

    In practice, when we go to our doctors and do not get straight answers — when an oncologist refuses to admit that you are dying until you corner him and force it out of him — we feel betrayed and angry. We should not be the ones telling our doctors that they cannot keep us alive. If they tell us they can, it had better be true.

    In theory, doctors have more experience of end-of-life than laypeople do. They can see it coming, they have worked with many, many families. As laypeople we accept that death may hold less fear than life in painful and humiliating circumstances. We expect that our doctors share this human perspective. If someone is in a specialty where they treat lots of old people, or lots of very sick people, we expect that we can benefit not just from their skill at keeping us alive, but also from their skill at helping us meet death.

    In practice, when the doctors we turn to for help are the very people we must fight in order to be allowed to die peacefully, we feel betrayed and angry.

    My own experience with doctors and end of life has been positive. Those caring for my loved ones have been acutely aware that all of their patients die and sympathetic to the wishes of their dying patients. My friends have had somewhat more mixed experiences; usually positive, but sometimes having to corner a doctor into admitting that the fast-growing metastatic cancer is, in fact, terminal.

    But my experience with psychiatry has been largely that of betrayal and anger. I’ve written about that elsewhere, so I will just say here that I fully identify with being the good patient who did all the right things… and who was hung out to dry.

    Compliance is a double-edged sword. Patients can trustingly enter a relationship with a medical team expecting that the deal is that they will offer compliance in exchange for respectful treatment. If it doesn’t work out that way — if aggressive self-advocacy is required — that is, knowing what you want in advance and insisting on it — the basis of the relationship is disrupted. In these situations I cannot see that patients can be anything other than angry — outraged, even.

    So snoop, everyone on this board can speak to the theory: you and your family should not have experienced what you did. I don’t expect to hear any defences. In practice however… you did. And I don’t expect to hear much anger from the doctors posting here either. In general we seem much less able to address the gap between theory and practice than we are to describe the theory.

  9. adrianbkelly says:

    I have been a haematoncology nurse for 10 years and now work in oncology research, and so have treated many patients with chemotherapy. I thinks it’s important to point out that chemotherapy can be absolutely horrible, especially in many haematological disorders, but with advances in treatments for side effects and in the treatments themselves, it is becoming more and more tolerable.
    Many more treatments are now being given to outpatients and we are seeing increasing oral forms of chemotherapy, reducing the need for hospital stays, cannulation and indwelling lines. We are also using increasing numbers of monoclonal antibodies and other targeted therapies that, on the whole, have many fewer side effects than chemo.
    Many of my patients come in absolutely terrified of chemotherapy, expecting to be vomiting all the time, losing loads of weight and hair, and looking like a walking corpse. Almost all of them are then pleasantly surprised and get through treatment with abosolutley minimal side effects.
    I know that chemo isn’t pleasant and it isn’t perfect, but if only some of these CAM quacks who demonise it could come and see some of the patients who are actually treated with it, and speak to those who have had months and years added to their lives because of it, maybe they’d change their minds.
    I’m not holding my breath, though!

  10. pmoran says:

    “When I asked if any of these tests could possibly result in either a different diagnosis or some kind of a treatment regimen, I was told no, she was too far gone, but that, as doctors, they were driven to find out as much about the precise nature of her cancer as possible. ”

    ??? If true, this is serious mistreatment. We often perform what can in retrospect be perceived to be “unnecessary” investigations when making sure that the cancer IS cancer, and definitely beyond useful treatment, and not an unusual variant that may respond to unusual measures, but what is described here would be totally indefensible.

  11. TsuDhoNimh says:

    And then there is this case:

    /abcnews.go.com/Health/Wellness/nicaragua-abortion-ban-stymies-woman-chemotherapy-cancer-treatment/story?id=9936908

    Fearing prosecution under strict anti-abortion laws, doctors in Nicaragua have refused to provide chemotherapy to a woman with cancer because she is 10 weeks pregnant.

    Nicaraugua has a total ban on abortions, with criminal penalties for patients and doctors.

  12. rosemary says:

    Adrian & Peter, I appreciate your comments and would be interested in hearing from other practitioners and people who have had chemo for cancer.

    I have heard that it is now possible to control the pain of terminal cancer, or at least reduce it to bearable levels. But I’ve also heard that many doctors refuse to prescribe the necessary drugs even at the end of life because of cultural attitudes towards addictive drugs and have no idea if any of this is true.

    I realize that there are many kinds of cancer and would guess that the pain caused by the disease varies from person to person depending upon the course the disease takes in the individual. I also realize that pain is subjective, but are there any statistics showing that a % of people with the disease can die relatively painless deaths? If so what are the numbers? If not, based on personal experience what would your guesses be?

  13. wales says:

    I have known multiple people who have died of cancer, the majority while receiving conventional medical care. They all became extremely emaciated and they all experienced pain. Most recently a family member died of pancreatic cancer. When the chemo was no longer working they stopped treatment and he spent the last 6 months at home, with hospice care. He was made as comfortable as possible and did take full advantage of pain killers at the end. Seeing death with dignity at home was in sharp contrast to my father-in-law’s miserable last six year of life in a nursing home.

  14. runkrun says:

    I worked for a year as a doctoral-level practicum student in health psychology in a leukemia unit. I had a solid-tumor patient who insisted on solely receiving high-dose vitamin C and nutirtion shakes as his only treatment, based on the recommendation of his holistic medicine doctor. He died a horrible death, and I was shocked that she could not be brought up on malpractice charges (still look for her name on Quackwatch, even 3 years later).

    I also had the experience of working with several patients who wanted to opt out of chemotherapy, because they felt that they were at the end of their life cycle, and wanted to die in as much peace as possible. I would go through with them the possible, some horrific, side effects of untreated leukemia, and there were a few who still insisted that they did not want to fight anymore. One in particular was overruled by his family and his doctors, and spent his few remaining weeks in a chemo-induced coma. I always wondered if he would have been better off is someone had listened to him the first time. Still would have died, but maybe would have been able to see his gradnkids a few more times.

    Turning down chemotherapy can have horrible effects, but I also wish there was more support for listening to people who are ready to die. The difference between the two cases I presented is that the former thought his woo would save him, and the latter knew that nothing would.

    I work in a different area of health psychology now, but still miss my cancer patients.

  15. windriven says:

    “Turning down chemotherapy can have horrible effects, but I also wish there was more support for listening to people who are ready to die. ”

    A few states – Oregon and Washington, notably – have assisted suicide laws that might arguably spare people the most hideous of the consequences of end-stage cancers. One hopes that other states will make this alternative available.

  16. Geekoid says:

    I think the issue being addressed is reasons why people turn down treatment. Specifically thinking that feeling better means the quackery they have been tricked into using is working,. when ti’s really just the chemo stopping.

    Chemo is a horrible process that poisons the body. It can also stop some cancers.

    It’s one thing to have assisted suicide laws, it’s another to have a teen tricked into thinking chemo was killing him and that wishful thinking will make him better.

    A problem that can occur with assisted suicide is that people don’t think they have a choice, or choose it over some irrational belief that chemo can’t possibly help. So when advocating assisted suicide, be sure the law includes a way to be sure the patient has be adequately informed of options from a qualified professional. i.e. someone with a specialty in the area of the illness and whose profession you don’t have to put air quotes around.

  17. windriven says:

    @Geekoid

    I can only speak to Oregon and Washington legislation, both of which require, among other things, a physician’s certification that the patient is terminal.

  18. rosemary says:

    Geekoid, “I think the issue being addressed is reasons why people turn down treatment.”

    I think there are a few related topics being discussed. At one end is the is irrational fear based on erroneous information about treatments made out to be far worse than that are that cause young people to refuse treatment which statistics show offers very high odds of saving them from premature deaths and enabling them to live relatively long healthy lives.

    At the other end is the kind of treatment offered to terminally ill cancer patients, those who almost all practitioners of evidence-based medicine will agree cannot be effectively treated.

    In middle are cancer patients where the best estimate that the treatment will be effective, or at the very least offer several more quality years of life, may be about 50-50.

  19. Calli Arcale says:

    wales — I, too, would like to have the chance to go as your family member did, should I develop pancreatic cancer, and not as your father-in-law did. My grandfather felt the same way, and when he develop symptoms highly suggestive of pancreatic cancer (in his 90s), he leveraged his medical background and refused to have it diagnosed. He did not see any point; he’d had a full and productive life, was ready to go, and felt that treatment offered only minimal gains for considerable pain. He preferred hospice. (Note: my grandfather was *rabidly* opposed to alternative medicine. You didn’t want to be in the room with him when he got talking about chiropractic or homeopathy.) He died at home, attended by a son who had just days before reconciled with him.

    Hospice, in my opinion, is not alternative medicine. It is mainstream. It is all about palliation — keeping the person comfortable after conceding the battle. It should be approached as all end-of-life decisions should be: with enough information to make an informed decision, respecting both the wishes of the patient and the quality of life that he or she will have.

    This is in stark contrast to my aunt, who died of breast cancer in her 20s. The doctors were not frank with her; perhaps too tired or afraid to tell her the truth in the face of her ernest faith in their power, they sent interns to talk to her, and none managed to convince her of the truth: that she was beyond saving. She was experiencing many of the horrors Gorski listed, including the lungs constantly filling with fluid. She finally died of pneumonia. She should have chosen hospice care, I believe, instead of checking into a hospital for an utterly pointless chemotherapy regimen. It did buy her time — but time hospitalized and in great pain. I think relieving her pain would have been better.

    So there are complicated decisions at the end of life, and I think both the choice to use chemo and the choice to *not* use chemo can be legitimate, science-based decisions. That doesn’t horrify me, and I don’t believe it’s what Gorski is speaking against. What he’s speaking against is the lies spread by frauds who claim to be able to cure incurable cancer. I have no problem with someone coming up with a new cure for cancer; it’s the ones who simply fake a cure that anger me. Their patients spend huge sums of money, travel great distances (often separated from loved ones), and give up even hospice in pursuit of a will-o-the-wisp. And then the frauds pretend they didn’t exist, or blame their deaths on them, and continue to sucker more dying people. They could have died at home, in dignity and with their pain hopefully controlled.

    The story one poster above told about the woman in Nicaragua denied chemo because of her pregnancy is scary. I fear the reverse may also happen because of the pro-life movement, as they are now broadening their aim beyond abortion and towards the end-of-life. The fearmongering about fictitious “death panels” was just a start. Are we going to see situations where people are *forced* to receive chemo, even if there is no hope of cure?

    Unscientific thinking can, ironically, both cause people to refuse useful chemo and cause people to accept futile chemo, and so it’s important for us all to promote scientific thinking. People deserve to know the realities of death.

  20. edgar says:

    Beautiful post and comments.
    Cancer sucks
    Chemotherapy sucks.
    Science cannot make cancer suck less.
    Science can make chemo suck less.

  21. lamamaloca says:

    That case in Nicaragua is horrible. That is one reason (among many) that I am no longer involved in the pro-life movement, although I am quite sure that the vast majority of those in the movement would also be horrified at that. For what it’s worth, Catholic teaching would allow a woman in such a situation to do whatever is necessary to save her life, even if it resulted in the death of her baby.

  22. red says:

    Seven years after my mother’s death, my father and I still wonder if chemo was worth it since her lung cancer was so advanced by the time she was diagnosed, that she only had a few months (and it turned out, only a few weeks). This article affirms to me that had she lived even a few months, chemo likely would have improved her quality of life and made the end much more bearable. Not to mention, I am aware of a friend’s father with the same cancer, who is currently “beating the odds”, greatly outliving his prognosis, because of chemo and radiation treatment. Every case surely is unique, but if I meet anyone tempted to avoid or postpone chemo and gamble with alternative medicine, I will point them to this article. Thank you.

  23. mikee says:

    I feel privileged to read the comments on this article. Medical research can sometimes seem so cold and clinical it is important to remember the human side. I’m sad for those who have experienced less than ideal treatment from medical professionals. I think some of the problems mentioned come from poor or late diagnosis of cancer, and sadly some from the financial considerations around cancer treatment.
    I still have my mother thanks to a mastectomy and chemotherapy to treat early detected breast cancer. My aunt died earlier this year of ovarian cancer, after the maximum number of treatments (7 I think) and almost weekly drainage of fluid from her body. She fought hard to be around for her family and friends for as long as she could and I thank modern medicine for that. However, I understand the comments of those who advocate for patients having the option of choosing to die.
    David honestly outlines the many side effects of cancer treatment, however every day progress is being made in cancer research, and treatments become better year by year.
    The financial side of treatment always concerns me. In NZ we have a reasonable public health system, however when there was the possibility of colon cancer, it could only offer him a colonoscopy in 16 months time. We went private and had it done within the week.

  24. Katyusha says:

    “Alternative cancer cures” are the only field of quackery that incites visceral anger in me, to the point where I can’t respond diplomatically.

    I was treated for acute myelogenous leukemia at age 12 (mid-1990s), and have been in remission since then.

    My main complaints had nothing to do with the chemotherapy – I understood it was the only option for survival – but that:
    (a) the doctors didn’t tell me my chances of survival, more importantly they didn’t give any indication of the treatment plan (yeah, I was precocious, and asked a ton of questions);
    (b) they always soft-talked the side effects, which turned out to be severe;
    (c) they were unbelievably (traumatizingly) bad at pain/sedation management during procedures such as bone marrow aspiration, spinal taps, and intrathecal chemotherapy.

    These are care issues. They can be improved, even if the treatment itself cannot be.

    It seems as if some (certainly not all) of the big problems people have with cancer treatment have to do with its management – honesty from clinicians, detailed explanations of the options and odds, good quality-of-life care and pain management – as much as the treatment itself.

    Like edgar said:
    “Science can make chemo suck less.”
    I’d say care, using the science we already have, can make it suck less too.

    P.S. The real angels turned out to be the oncology nurses. If any are reading this, especially in peds: Thank you.

  25. Beryl Shaw says:

    Unlike most posts here – and the originator of this subject – I have had cancer. And I have had chemotherapy. Dying with a bowel totally blocked by a cancer that had been undiagnosed by 2 gastroenterologists and through various medical tests, the surgeon warned me I might not come off the operating table alive. And I new this was the truth because I could feel my body shutting down inch by painful inch. No joke!
    After this wonderful surgeon saving my life in middle of the night surgery; cutting out huge amounts of bowel (large and small – and engineering them together again) which would not have been necessary if these medical people had listened to me; they found that, during the time I’d been searching, it had gone from stage 1 to stage 3; into the lymph nodes.
    The oncologist was most helpful, giving me details I needed – without chemo I had 60% chance of dying. With chemo hopefully 60% chance of living. So I chose chemo. Because I still had things to do.
    The most important thing he didn’t tell me – and which wasn’t mentioned in the original rant here – is that chemo trashes your brain. I’ve had all too much illness and other disasters in my life and my fantastic brain (qualiying for entrance to Mensa being just one sign of this) is the only thing that’s kept me working and appreciating life.
    I’ve lost a lot of acuity of my brain since the chemo – which was, yes, horrible and life-threatening of itself – and I really resent this.
    If I’d been asked I’d have told them ‘If my brain won’t work to its already high level I’d rather be dead’. And meant it.
    I’ve worked really hard on it and some of my ability has returned, but I’ll never be the same. And because all my work for others relies on my brain functioning really well I hold this against the people who left me without full knowledge.
    All people should be allowed to make their own decisions – with full knowledge given them. I found every man and his dog, wife, budgie, etc tried to tell me about what would ‘save my life’ and I developed a fun way of putting them off. But if others go down that road, I believe they still have the right.
    Just give us the facts. And when it’s doctors who don’t – How dare they?!

  26. PAMI says:

    Ok, so I am trying to understand what it means to be a skeptic. I gave my breast to science 2 years ago. And after much much research and soulful thought I came to the conclusion that Chemo might be junk science for many of the ailments it treats. If one crunches the numbers they might not feel the risk benefit was worth it. The death it causes before the cancer might have gotten you. The brain damage (chemo brain) for life most of the time. The peripheral neuropathy that might cripple you for life. Being a massage therapist for the last 16 years I told them you take my hands and you might as well take me. Quality of life is very important for many of us. Also the risk of metastasis after chemo is pretty good too. So, for a 1 or 2 % maybe even 3% that it might change my outcome was not worth it to me and I turned down the oncologists for chemo. They will also admit (some of them) that chemo is a crap shoot at best. So, I hope that some of these main “skeptics” don’t end up with cancer in their life and that they might have to do the research that their health depends on. They might see the picture a little different. Also follow the chemo money it is no cleaner then the alternative health care money. I am not looking for any magical cures.
    I have not idea what the future will bring for me. When and if the cancer will or won’t come back. And, if I had done Chemo I would also not know what the future would bring. I just know this way I did not die from the Chemo treatment and I will have the facilities till I reach my future.
    From one “Sekptic” to another. May your journey be cancer free.

  27. Chris says:

    PAMI:

    Ok, so I am trying to understand what it means to be a skeptic.

    It means actually looking at the evidence with a critical and open mind. You could start by actually reading Dr. Gorski’s article, and then the articles at http://www.cancer.gov/cancertopics/pdq/treatment/breast/patient

    Anecdote time: the carpenter who recently worked on my house was diagnosed with breast cancer before last Christmas. By January he had one breast removed (yes, men also get breast cancer!), did a few rounds of chemotherapy and went to a couple of months of recovery (which drove him crazy because he was told not to do anything!). So by April he was back at work.

    If chemo kills, why was our carpenter still alive after treatment?

  28. Elliander says:

    My grandmother had Cancer a number of times and has gone through Chemo herself each time, and survived. So I know that, in practice, Chemo can help. However, the frequency at which the Cancer returns… well… I can’t help but think that if a Poison is capable of killing cancer cells, it might also be able to damage healthy cells in such a way as to affect the cells own “kill switch” which could in a way cause cancer in the future.

    When my Grandmother first had Chemo, her Salivary glands were destroyed. Today, I know, there are treatments to avoid that kind of damage. But the damage cannot be undone. Another problem I noticed is that after each Chemo her mind seems to get fuzzier. It’s as if her whole brain is slowing down. She’s not loosing memories, but she’s slower to process information. As if her entire nervous system has been disrupted. And now she is tired all the time. She used to have so much energy, even as an old woman. Now she doesn’t have any.

    Having seen what she went through, and the results of the treatment, I wish she would have at least examined alternatives first. “Alternatives” don’t mean untested methods. It just means something outside the mainstream method. For example, it is now known that certain forms of Cancer can emerge from Epigenetic changes. There have been some success with chemicals that “reset” methyl markers. But those, too, are poison. So last time I checked only the most critical of patients get it. In practice though, if an Epigenetic change can cause or cure a cancer, then wouldn’t that mean that anything that can cause an Epigenetic change can do the same? Since Epigenetic changes occur in response to a way someone thinks and feels, in addition to environmental stimuli then, technically speaking, even if there is no scientific basis for an “all natural cure” but the patient believes it works, then wouldn’t that belief in and of itself cause an Epigenetic change? On the flip-side, if someone is forced into treatment and believes that the treatment will kill them, wouldn’t that belief combined with anxiety hinder their chances for survival? Granted, the field of Epigenetics is still new and there is little or new Empirical evidence on if the body is able to target the changes in such a defined way, but it is still worth looking into. Lack of evidence is not in and of itself evidence that something doesn’t work and cannot work and I think people should be free to look into alternatives.

    Something else that really bothers me…

    A friend of mine had cancer that was able to be surgically removed. The Doctors wanted to give her Chemo as a “Precaution” to keep it from coming back. That makes no sense to me. If the Cancer cells are not present, there are no cancer cells to kill. On the contrary, I would think that causing intentional damage to the body would make someone more likely to become ill. She made the choice to not get Chemo in that case, and the Doctors were shocked to hear that.

    I have known a number of people who went through something similar. A girlfriend, for example, lost half her thyroid to cancer but never needed chemo. I just don’t understand why Chemo is being pushed as a preventive when it should be reserved for cases where cutting it out doesn’t work.

    Anyway, more on point with your article, I do believe there are SOME cases where Chemo can be of Benefit. And I do believe there are MANY cases where the alternatives are a Sham. But the Science is flawed, and there are many things that the Doctors do not know. Doctors are Humans too, after all.

    I myself had Autism which resulted from embryonic brain damage that many said was incurable, but through conscious effort and healthy eating my own damaged nervous system started to repair itself. I believed that my brain would repair itself if I only focused on what I had trouble with. If I listened to Doctors I would not be who and what I am today.

    So ultimately, although the advise of a Doctor can be valuable, the patient should have the right of choice. The government should never interfere with that choice, and Doctors should always respect that choice even if they do not agree with it.

    If people started to understand the circumstances in which they currently do not have a choice, I am sure that many people would avoid seeing a Doctor about Cancer Treatment to begin with out of Fear. A prospect much worse than people choosing not to act on a Doctor’s advice because most cases don’t need Chemo at all and they would be depriving of them of proper treatment.

    To be honest, if I was a parent, and I had a child with Cancer, I would seriously avoid taking that child to a Doctor until I have looked at alternatives because I know that the moment we walk into that office, my freedom of choice would be lost. And since I know that Doctors push Chemo even in cases where the cancer was cut out, I would be afraid that the child would be forced into Chemo even in a case like that. I would feel I would be protecting that child, and those feelings are what many parents would feel.

  29. Elliander says:

    ahh.. right here is one the articles that inflames concerns about forced treatment:

    http://www.healthfreedomusa.org/?p=434

    (I was looking for any case where chemo was pushed on a person without cancer to make a point)

    From what I read of a number of cases, regardless of how the cancer is removed, Doctors assume Cancer cells must be present even if they cannot prove they still exist within the body. That is why adults are suggested to take Chemo after Cancer has been removed. Of my friends who decided not to take the Chemo, none ever saw the cancer return. Of those who decided to take the Chemo, one died from the Chemo and another saw the cancer return. In the case if minors, we see a number of cases where Chemo is forced on children where there is no evidence that the Cancer cells actually exist.

    I do understand why Doctors would think there should be cancer cells left. They are difficult to locate, and it is possible that some remain to have to be removed again later. But at the point that a Doctor isn’t certain one way or another, doesn’t it become pseudoscience?

    That’s what makes this such a big issue for me. It seems like, at least in this type of situation, the Doctor’s advice is not based on any observation or scientific research. It just seems like, where Scientific research is lacking, a bit more restraint should be used when dealing with chemicals that can also kill.

  30. Harriet Hall says:

    Elliander,

    Science shows that some patients with cancer have recurrences and metastases.
    Science shows that chemotherapy can statistically improve survival for those groups of people.
    Science as yet has no way of determining which individual patients will benefit from chemo.

    Science shows that pneumonia will kill a higher percentage of people without antibiotic treatment.
    Science shows that some people will survive pneumonia with no treatment.
    Science shows that antibiotics can sometimes have side effects, even fatal ones.
    Science as yet has no way of predicting which individuals will survive without treatment or which ones will have side effects.
    Science shows that treating all pneumonia patients with antibiotics has a favorable risk/benefit ratio.

    Recommending treatment in these situations is not pseudoscience. It is applying scientific knowledge to the best of our ability.

    When scientific research is lacking, scientists do use restraint.
    The patient always has the right of choice; no one can force chemo on anyone. Your own words recognize that: you said your friend refused chemo.
    Unless you can produce evidence that some alternative treatment (or refusing chemo) has a better outcome, your advice sounds foolish and dangerous.

  31. My understanding is that oncologists are pretty clear about the limitations of what they can offer. David Gorski is typically quite straightforward that in most cases surgery cures breast cancer, but in some cases it doesn’t. The problem is that nobody knows which category any individual person falls into. Chemotherapy will help only those people whose cancer was not completely cured by surgery — and nobody knows who they are.

    The % increase in survival rates that chemotherapy offers over surgery alone may not appear very impressive, but for someone who wants to live the chemotherapy will be worth it. As a blogger, David Gorski is quite transparent about these facts and limitations. I imagine he is similarly transparent with his patients.

    For someone who isn’t particularly attached to life… meh, the side effects of chemotherapy may not be worth the increased chances of survival. (For instance, I might be in this camp.) That would be an educated, science-based choice — not a rejection of medicine or an assertion that medicine is pseudoscience.

  32. Elliander says:

    Harriet Hall,

    I’m not disputing the benefits of Chemo or the scientific basis of those benefits. I am disputing the logic of using Chemo in cases where no evidence of Cancer can be found.

    As pointed out in this article, and many others, the patient does not always have a choice. Generally speaking, if the Doctor suggest chemo for a child, and the child refuses, it is typical for Child Protective Services to remove the child from the parents and force that child into Chemotherapy. Even “children” as old as 17 face legal battles over the right of choice even into the age of 19.

    Since the Doctor’s opinion is used as a legal basis for forcing treatment, then yes, I would argue it is pseudoscience. At least in that context. Because at that point it makes the leap from an educated guess to using government authority to impose ones opinion over the life of another. I would also argue that it is pseudoscience for a Doctor to state Chemo is needed after the removal of cancer to prevent a return of Cancer since, as far as I know, there is no way of knowing if Cancer is even present or if it would be capable of preventing it. Just as you said: “Science as yet has no way of determining which individual patients will benefit from chemo.”

  33. David Gorski says:

    Also the risk of metastasis after chemo is pretty good too.

    Huh? Are you claiming that chemotherapy causes metastasis?

  34. David Gorski says:

    I am disputing the logic of using Chemo in cases where no evidence of Cancer can be found.

    You mean you’re questioning the concept of adjuvant chemotherapy? (That’s where chemotherapy is given after surgery with curative intent in order to decrease the risk of recurrence.)

    Actually, chemotherapy is probably more effective in such situations because it works better with small tumor deposits than with macroscopic tumors.

    As for the case of Chad Jessop, the whole story was exaggerated and likely full of crap, as my “good buddy” discussed back when it was originally going on:

    http://scienceblogs.com/insolence/2007/11/an_update_on_cancer_boy.php

    http://scienceblogs.com/insolence/2007/11/lee_woodard_of_human_rights_usa_i_have.php

    http://scienceblogs.com/insolence/2007/11/why_would_i_promote_a_hoax.php

    Just as you said: “Science as yet has no way of determining which individual patients will benefit from chemo.”

    True but with one huge omission: Science may not be able to tell individual patients whether they will benefit, but it sure can tell those patients what the odds are that they will benefit.

    Also, more and more, science is developing prognostic tests that tell us which patient is likely to benefit from chemotherapy and which is not. In my field of breast cancer, for instance, there is the Oncotype DX test, which is in widespread clinical use.

  35. A couple of things.

    I’m sure chemotherapy varies depending upon the requirements. But, when I helped my girl friend out after one of three (or might have been four) of her chemo sessions (after breast cancer surgery). She was not terribly ill. I was with her for a long week-end to fix meals, do laundry and generally be there if she needed to be taken to the doctor. I know she didn’t feel good. She didn’t eat much. But she was not vomiting or bedridden. At one point she showed me some yoga. We sat around and gossiped a lot. She said this was pretty representative of her other sessions. She did not lose any of her mental faculites. She did lose her hair, which grew back. That was ten years ago. She’s had no return of cancer. I believe she thought it was well worth it. And she is quite critical of conventional medicine in general.

    I know chemo can be a terrible thing. I’ve had other family members with much more invasive cancers that suffered terribly with the chemo recommended for their cancer. None of them survived. None of them had a good chance of survival when diagnosed.

    I just mean to say that I don’t believe all chemo is created equal and some people’s reaction is not near as severe as you might think.

    Elliander – Children can not legally approve (or by default decline) medical services. They are not developmentally mature enough to understand the consequences. Only their legal gaurdian can approve medical services.

    Yes, some parent’s lose custody when they endanger their child’s life due to lack of medical care. In fact a friend of mine’s niece was adopted after her first parents lots custody. They repeatedly didn’t show up at doctor’s appointment to care for their daughter with a congenital GI disorder. The baby was very sick. After CPS removed the child, based on the doctor’s opinion, she had one surgery, was adopted* and has been healthy since.

    CPS has been known to overstep their bounds, occasionally. But you are going to have to show a lot more evidence to prove that a scenario where the child’s life is not in danger and they are removed is “typical”.

    *After a second attempt with her first mother, who left the child with her Grandmother and didn’t return.

  36. Harriet Hall says:

    “at the point that a Doctor isn’t certain one way or another, doesn’t it become pseudoscience?”

    No, it doesn’t. It becomes science that depends on statistical probabilities.

  37. Elliander says:

    David Gorski,

    That isn’t entirely what I dispute. If traces of cancer cells are detectable, then it’s probably a good idea to do something. I’m talking about cases where no traces of cancer can be found. I do now that not all Doctors push it either: When my girlfriend had her tumor removed, for example, the Doctor actually said Chemo wasn’t needed and she hasn’t had any tumors since. She was also fortunate to have enough remaining thyroid intact to not need thyroid medication. When her mother had breast cancer, and all traces of the cancer had been removed, however, the doctors were pushing her to have Chemo as a “precaution”. It’s really that kind of situation I have a problem with. If they can’t find it, they must have done a pretty good job removing it and should just stop there.

    This article: http://www.articlesnatch.com/Article/Chemotherapy-And-Brain-Damage–Is-There-A-Link-/958780 is really what helped one friend make a final decision. She said that Dementia runs in her family and that she would rather die than even have an increased risk of loosing her mind. Although I personally never had to deal with cancer I’d say that if there is even a chance of my mind being affected permanently I’d make the same choice.

    ya, I would agree there are a number of inflated articles. The internet is full of contradictory information everywhere. It’s really just the part about freedom of choice that urks me. Having seen Doctors push for adults to have Chemo who do not have a trace of Cancer left in the body, it wouldn’t surprise me if a Doctor would push the same on a child.

    micheleinmichigan,

    I’m sure you know what I mean. It’s the Parent that makes the legal choice for the child, but in cases where the “child” is only a year or two shy of being an adult the parent generally respect’s the child’s wishes. I hear that at least one state is giving more regard to what the child wants, but I have not been able to find verification of that.

    If I say much more about CPS, I’m sure I’ll be arguing with someone about it forever and a day. Suffice to say, if a Doctor says that a child’s life would be in danger without chemo then CPS would force the parent to comply because it is their job. I don’t have to provide any case examples to say that they will do what they think is best for the child, and they they think the Doctor knows best in all cases of medical care.

  38. Elliander says:

    Harriet Hall,

    That logic doesn’t really make much sense, and, as I said: “At least in that context” – The point here is that the opinion is taken as an absolute fact. I’m not talking about someone saying “it might return.” I’m talking about a Doctor telling someone “This WILL help prevent the cancer from returning”

    By your logic, I could say “The Sun will explode tomorrow” because, hey, it might.

  39. Elliander – Look-up the recommended treatment and survival rate for the most common type of thyroid cancer.
    Here “The survival rate for papillary thyroid cancer is excellent. More than 95% of adults with such cancer survive at least 10 years. The prognosis is better for patients younger than 40 and for those with smaller tumors.”
    https://health.google.com/health/ref/Thyroid+cancer+-+papillary+carcinoma

    You’ll notice the recommended treatment does NOT include chemo.

    Look-up the recommended treatment and survival rate for breast cancer. You will find they are not the same. Because the cancers aren’t the same. You will notice that chemo is sometimes recommended treatment.

    Apple – Oranges

  40. A post about overdiagnosis and overtreatment of cancer:
    http://scienceblogs.com/insolence/2010/06/cancer_overdiagnosis_and_overtreatment.php

    Elliander,
    No, that is not a good analogy.

    It’s more like, I’m a health care worker and I get a needle stick from a dirty needle in the ER. I don’t know for sure if HIV particles were transferred into my bloodstream and I have no way of knowing for sure. Let’s say that 1% of the people in my situation who do not get antiretroviral therapy become HIV+, but only 0.01% of people in my situation who do get antiretroviral therapy become HIV+.* The choice is mine. Do I take a small risk without antiretrovirals or a tiny risk with antiretrovirals?

    Most people who care about their lives will choose the tiny risk over the small risk.

    Another analogy would be do I cook my hamburger or not? Eating raw hamburger will probably not kill me, especially if it’s only once. But it might, so most people choose cooked hamburger and take their risk of e coli disease from small down to tiny.

    This is not pseudoscience.

    * Numbers completely fictitious.

  41. Elliander says:

    micheleinmichigan,

    I do understand and agree that there are different kinds of cancers with different recommended treatments. My grandmother survived a few different kinds of cancers… oh, at least 6 times. And she is still alive today, having gone through Chemo a number of times. So I am not disputing any of that really. (and I think 10 years is understating the matter. My girlfriend pulled through really well, and the Doctor even made sure to cut along the line where the neck normally moves anyway such that I don’t even notice it anymore)

    But I stand by my position that if the Doctor cannot find any trace of cancer after treatment has been rendered, there is no reason to treat any further. Especially not with something that carries the risks of Chemo.

    Now, if Doctors were required to say something like, “We cannot guarantee that this will help at all” in a case where the presence of the Cancer cells is questionable, then I think that would completely diffuse the whole forced treatment problem because then the Doctor’s suggestion wouldn’t be taken as a matter of fact.

  42. Elliander says:

    Alison Cummins,

    Now THAT is a really good argument. Kudos. And I can relate to it: When I was in early high school I was once bitten by a dog behind the left leg while waiting for the bus. Since the dog could not be located to see if it had rabies, I had to get vaccinated against rabies. I think the actual vaccination had a very little risk of something, but it was negligible.

    But again, we are dealing with complexities beyond something like that. For one, with Chemo, it is a certainty that it will cause some form of damage since that’s what it is designed to do: Kill cells. Until there is a method of targeting cancer cells, it will target all cells equally.

    So a better example would be this: If I eat that meat raw, I have a pretty good chance of getting sick with something that has a chance of killing me. Now suppose I have no method of cooking it but some fictitious tool that will make me sick with something that has a chance of killing me.

    Even so, that isn’t Pseudoscience. It’s a cost/benefit analysis. What *IS* Pseudoscience would be this example:

    “oh, there is no cancer in the body that we can find, but if you take Chemo it will help prevent it.”

    That’s based on fuzzy logic. If you take the statistic of how many people get Cancer after having cancer cells removed, I can see how some people might think it to be logical, you you cannot say for certain if any form of treatment will help if you cannot say for certain if the disease is even present.

    Now, back to your cost/benefit analysis, let’s take that a step further: If, say, the chance of getting the cancer again is 3% (fictitious number) but that number is based on those who have cancer cell remnants, and not based on the patient’s actual situation, it would be illogical to expect the same numbers to apply.

    But anyway, beyond all these numbers, it still comes down to this: Adults, Parents, and the Government do make choices based on what the Doctors say. So you need more than an opinion or an educated guess. You have to be clear with someone, or you come into a real mess.

  43. David Gorski says:

    That isn’t entirely what I dispute. If traces of cancer cells are detectable, then it’s probably a good idea to do something. I’m talking about cases where no traces of cancer can be found.

    But that’s exactly the point. When adjuvant chemotherapy is given, there are no detectable tumor cells, rather microscopic tumor deposits that cannot be detected on any imaging studies. The patient appears to be disease free! Yet we know that adjuvant chemotherapy decreases recurrence rates in a number of cancers above a certain stage that have been completely resected surgically, the two most common examples being breast cancer and colorectal cancer

    Let me make this very clear: In the case of adjuvant chemotherapy no traces of tumor can be found; yet we give chemotherapy because we know that it decreases recurrence rates in the right patients. In other words, we infer the existence of tumor deposits too small to be detectable from the fact that doing something designed to mop up those cells results in a decreased chance of recurrence. True, we have other lines of evidence supporting the existence of these microscopic tumor deposits, but in individual patients being treated we don’t detect them before we do chemotherapy using standard tests that we do on cancer patients. We do the chemotherapy in patients with no detectable disease because we know it reduces the chance of the cancer recurring.

  44. pmoran says:

    Elliander, even if there is only a modest risk of the cancer recurring after primary treatments, such recurrences are virtually always incurable, usually multiple metastases in the lungs, liver, brain, bones etc. A miserable death is inevitable.

    So, yes, doctors do expose patients to “unnecesssary” risk from chemotherapy, but this is to prevent intolerable outcomes in a few.

    Doctors are conscious of the problem and a lot of effort is going into finding ways of slecting those at risk.

    Modern standards of informed consent should protect patient’s rights.

  45. Harriet Hall says:

    Elliander said,
    “if Doctors were required to say something like, “We cannot guarantee that this will help at all” in a case where the presence of the Cancer cells is questionable, then I think that would completely diffuse the whole forced treatment problem because then the Doctor’s suggestion wouldn’t be taken as a matter of fact.”

    You are confusing “forced treatment” for children who have cancer and will die without treatment with situations where adjuvant chemotherapy is offered (explained by Dr. Gorski above).

    Doctors don’t “guarantee” anything, and when they offer adjuvant chemo they usually explain the pros and cons and let the patient participate in the decision with informed consent. You have set up a “straw man” paternalistic doctor who says things real doctors seldom or never say.

    “The point here is that the opinion is taken as an absolute fact.”
    It’s not an opinion, it’s a statement of probability, and if it is taken as an absolute fact that’s a miscommunication probably as much the fault of the patient as of the doctor.

    There is no way that this constitutes pseudoscience. You seem to have your own personal definition of pseudoscience that doesn’t correspond to ours.

  46. Elliander says:

    David Gorski,

    Then I disagree with the logic behind that kind of therapy. Simply put, there is a 100% chance that the Chemo will cause damage to the body, there is a high chance that it will impair normal neurological activity (very little studies have been done to determine the exact nature and percentage) and there is evidence to suggest that Chemo can cause other kinds of cancers. It seems ludicrous to use something which causes cancer on someone to “prevent” cancer when you don’t even know if they still have it.

    It makes sense to use it in a Life or Death situation. It doesn’t make to do it in this manner.

    And like I said before, I have known many people with different kinds of cancer. Those who had Chemo always got it again and those who didn’t never got it again. I have never known someone, personally, who died from Cancer. The Doctors always did a good job removing it up to a point. But I have seen the damage Chemo does so I just can’t grasp at the logic of using it needlessly.

    Harriet Hall,

    You really are missing the point. It’s like this: CPS, and Parents, generally REGARDS the opinion of the doctor as a fact. That REGARD becomes the foundation of court orders and forced treatment. That reality cannot be disputed. I’m not really saying it’s the Doctor’s fault in all cases, but this is a real world problem that could be corrected fairly easily.

    According to Dictionary.com >

    ” pseu·do·sci·ence (sōō’dō-sī’əns)
    n. A theory, methodology, or practice that is considered to be without scientific foundation. ”

    In order for something to be Science it must follow the Scientific Method.

    I have personally seen Doctors tell people that the Chemo WILL help prevent the cancer from returning. That is very different from the wording that David used above. It’s one thing to talk about recurrence rates. It’s another to apply this to the individual in the manner that I have seen.

    It is not Pseudoscience to talk about a statistic. It is Pseudoscience to bring it to the conclusions that many people seem to bring it to, or to use them in a manner inconsistent with the actual tests.

  47. Elliander says:

    I did a bit more research, and tried to find another more down-to-earth case of forced Adjuvant Chemotherapy.

    Here is one:

    http://www.whale.to/v/horwin1.html

    written by the Parents of the Child. It appears to be legit, as it links back to another site with photos of the child.

    http://www.ouralexander.org/

    From what I could gather, this case was a bit different. Instead of being forced into Chemo by the court, the government barred Doctors from treating the child before Adjuvant Chemotherapy was administered.

    This is a bit different, but shows how a little bit of statistical information is taken as hard facts that becomes a government policy that has the potential to impair medical care.

    In the end, the child died. Not of Cancer… but from the required Chemo that was just supposed to prevent it’s return.

  48. weing says:

    “In the end, the child died. Not of Cancer… but from the required Chemo that was just supposed to prevent it’s return.”

    And we are to believe this because….?

  49. Harriet Hall says:

    Elliander,
    You are new to this website, so I guess you can be excused for not knowing that citing whale.to is the best way to undermine any credibility you might have.

    The people you know who got chemotherapy may have all had recurrences, but the rest of us know lots of people who didn’t, and when you use real data instead of anecdotes, there is clear evidence of benefit for specific chemo regimens for specific cancers. Your concept of pseudoscience is bizarre. There IS scientific foundation that overall, statistically, chemo has benefits; there just isn’t yet any scientific way to predict which individuals will benefit. Decisions about how to apply incomplete scientific information to a specific patient’s case are a matter of judgment and applied science: they do not constitute pseudoscience.

  50. David Gorski says:

    It makes sense to use it in a Life or Death situation. It doesn’t make to do it in this manner.

    Cancer is a life-or-death situation, or hadn’t that occurred to you?

    And like I said before, I have known many people with different kinds of cancer. Those who had Chemo always got it again and those who didn’t never got it again. I have never known someone, personally, who died from Cancer. The Doctors always did a good job removing it up to a point. But I have seen the damage Chemo does so I just can’t grasp at the logic of using it needlessly.

    You appear to be exhibiting a characteristic of how humans–all humans–think known as confirmation bias, coupled with the dangers of making sweeping generalizations based on far too few observations. The very reason we need science-based medicine and rely on clinical trials is because it’s very easy for individuals to make observations like this that appear correct “at the single person level” but do not reflect the general situation.

    Also, define “needlessly.” If chemotherapy decreases the risk of a catastrophic recurrence of cancer in patients with certain kinds of cancer, using it to prevent those recurrences is not “needless.”

  51. Th1Th2 says:

    Don’t these voodoo doctors see their chemo patients all look the same, emaciated, pale, malnourished, weak, just the what a chronic drug addict would look like? These signs are not attributable to cancer, but rather to indiscriminate and overzealous chemical toxicity resulting to destructive iatrogenic events.

    What’s next bone marrow transplant? I am not surprised why Modern Medicine is only about symptom relief and parts replacement. If you ask for a cure, there is none. Just like God, it does not exist!

  52. weing says:

    “Don’t these voodoo doctors see their chemo patients all look the same, emaciated, pale, malnourished, weak, just the what a chronic drug addict would look like? These signs are not attributable to cancer, but rather to indiscriminate and overzealous chemical toxicity resulting to destructive iatrogenic events.”

    My father died from pancreatic cancer and he looked just like that in the last couple of months of his life. He never received any chemo. So, you are wrong again, as usual.

  53. Th1Th2 says:

    weing,

    Tell me he’s not drug-free since the diagnosis.

  54. Chris says:

    Elliander, let me introduce you to Scopie’s Law:

    In any discussion involving science or medicine, citing Whale.to as a credible source loses you the argument immediately …and gets you laughed out of the room.

    Trust me, there is lots of lunacy to be found on Scudamore’s whale.to website!

  55. pmoran says:

    Elliander, even if your personal observations on cancer patients were very carefully kept and well-documented, they contradict numerous careful clinical studies.

    Why might that be?

    It could be from a combination of chance and the fact that patients who are not offered chemotherapy generally have a good prognosis, and many of those who are offered it have a terrible prognosis that chemotherapy is not likely to change more than a few per cent.

    In fact, most cancer patients offered chemo are being treated palliatively. with no expectation of cure. Have you excluded those from your case collection?

  56. Thing1 and Thing2 – “What’s next bone marrow transplant?”

    Well, yes. That reminds me that I wanted to take a moment to plug a worthwhile endeavor. If you can donate blood you might be eligible to be a bone marrow donor and save someone’s life or maybe you can help the bone marrow donor program in other ways. You can find out more at http://www.marrow.org

    Also, don’t forget, those organs. You can’t take ‘em with you.

    I have a friend who has been able to see her children grow-up due to a bone marrow donation. I have another friend who is living a much better life due to his donated kidney.

    Okay, I’ll stop my plugs for worthwhile medical non-profits now. :)

  57. Dawn says:

    @micheleinmichigan: go ahead and plug. Maybe you will kick someone into gear like me. :-)

    I can’t donate blood (for some reason, it really upsets the blood bank people when my blood pressure drops to 70/40 during blood donations and I pass out….) so don’t think I can be a marrow donor either, but haven’t looked into it. Thanks for the push; I’ll do so as soon as possible.

    My kids, who are wonderful, both donate blood. I don’t know if they have been marrow tested or not.

    All of us, husband, me, kids, have organ donor permits on our licenses.

  58. Elliander says:

    David,

    “Cancer is a life-or-death situation, or hadn’t that occurred to you?”

    That’s… insulting. The husband of my girlfriend’s friend died of chemo just a few months ago. Of COURSE I know it’s a life-or-death situation! You just don’t seem to understand in what way! Cancer is life and death. LACK of cancer is not. If the cure can kill, then it just seems premature to do it.

    I am fully aware that there is a chance that microscopic cancer cells do dislodge from the location of the tumor. (I have read the medical text books, and my father is in Medical School) And I am aware that in an extreme case, these dislodged particles can potentially form new cancerous growth all over the body. However, this is only a CHANCE. And even if they are dislodged, it is also only a CHANCE that they will establish a new cancer growth. While it is true that if the cancer migrates to a location that cannot be cut out it can become impossible to cut out, and difficult to test for, it is still only a chance. Compared to a guarantee of damage, the chance doesn’t seem logical.

    I am also aware that my own observations are limited. But my point there was not so much a “sweeping generalization” but the point that Doctors CAN be WRONG! If they took the Doctor’s advice instead, because all the cancer was successfully removed, instead of having a lower chance of getting cancer to return in their particular case it would have been a higher chance of return. But since it is impossible to tell if they had the cancer cells at the time the Doctors are incapable of distinguishing between two probabilities.

    As far as needlessly… Here’s the thing: The body has a defense against cancer. In the event that a cell mutates, a cell has a sort of “kill switch” to destroy itself. The only way for cancer to occur, then, is for both the kill switch to fail and the cell to mutate. When the immune system and overall health is compromised the chance of the kill switch failing is higher.

    What you don’t seem to understand is the whole objection I have: Why take a certainty of long term potentially permanent damage with the possibility of death… simply to prevent a possibility of death? I just can’t wrap my mind around why anyone would choose certain ill health like that.

    By your logic, I suppose, if they came out with a genetic screening test to determine if you have a gene that has a chance of causing cancer, you’d support the notion of preventive chemo in a case like that too.

    Chris,

    That’s why I cited a SECOND source. With photos. A news article is one thing. The life photos of a child going through Chemo before dying brings it down to Earth… and my whole point there was just to bring up an EXAMPLE of forced treatment in a non-life/death situation since that was doubted.

    pmoran,

    Well, lots of things contradict the norm. Heck, Ancient Chinese thought that Mercury would bring them eternal life. We see what that got them.

    Although, yes, one girlfriend wasn’t offered chemo – her mother was and refused the chemo. My grandmother was subjected to both radiation and chemo treatments. I double checked with her though, and to retract one statement I made previously, it wasn’t the Chemo that damaged her salivary gland by the radiation. However, her nervous system and energy levels are characteristic of the long term impact Chemo appears to have.

    …….

    As for my statements of Pseudoscience, I think I found a better analogy:

    We know today that there are 4 blood types, each with two factors. We also know that there are genetic conditions which alter the way the blood develops, for example, the bombay phenotype. Or CiS-AB… in any case, with this knowledge, we can determine who would benefit from a blood transfusion.

    Well, let’s support for a moment that we did not have this knowledge. If we only had the observation that there is a 1 in 8 chance of a blood transfusion working, with a 7 in 8 chance of it causing a potentially fatal reaction depending on the amount of blood injected. Despite a few statistical anomalies, the general consensus would be that if you are in a bad accident a blood transfusion would be advisable. Despite having a 7 in 8 chance of the blood killing you, and despite having a chance that without the blood you might (with a very low chance) recover, the odds would be considered better since you would have a 1 in 8 chance of complete recovery compared to a near certain chance of death.

    Very Scientific scenario. And if the Doctors explained the odds in such a way, perfect. However, take the above scenario. If the doctor just told the patient, “You will die without a transfusion” or “A transfusion will help you survive” then it’s taking a perfectly scientific understanding, and making it into something that lacks scientific merit. A chance is different from a certainty. And in science, nothing is ever really proven only supported. Failing to make that distinction to a patient is a problem.

    Now, compare that scenario to a real world example:

    Currently, Chemo treatment appears to be like that. As far as I know, you really have no way of knowing if it will work or how bad a reaction you will get. Unless the person has demonstrated hypersensitivity to chemicals in the past (as I have) there is no indication so the Doctors have to rely on a generalized statistic comparable to not knowing blood types.

    However, recent news has it that advances are being made in understanding how the body reacts to Chemo and that is going to make changes to how Doctors determine candidates for Chemo. When that fully develops, Doctors will be able to tell what kind of reaction a patient will probably experience with a particular chemo drug which will make situations of Doctors failing to properly explain the situation much less.

    Though personally, I think money would be better spent examining what causes the “kill switch” in cells to fail. If you took a dose of chemo and applied it to a single cell – too small to actually kill the cell – what is the chance of the kill switch failing? If such tests were performed such that better Chemo drugs could be developed in such a way as to prevent the damage to the kill switch, it would diminish the long term damage and make chemo a safer option all together.

  59. “Why take a certainty of long term potentially permanent damage with the possibility of death… simply to prevent a possibility of death?”

    No. That’s not the choice.

    We all die. There is 100% certainty of death for all of us, with and without cancer, with and without chemo.

    When someone has had surgical excision of a tumor, an oncologist may recommend chemotherapy to reduce the chance of recurrence. This is “A certainty of damage, possibly permanent, which may or may not be disabling, with X possibility of an extended lifespan and Y possibility of a shortened lifespan.”

    This type of recommendation is based on DATA that show that for this type of patient, overall, chemotherapy extends the lifespan.

    Your hypothesis, based on logic, limited data and limited understanding of cancer therapies, is that chemotherapy is more likely to shorten the lifespan of someone with a resected tumor than to extend it. There is a lot of data on this topic. If the data were to support your hypothesis, the oncologist would not recommend the chemotherapy. (At least, not recommend that particular chemotherapy for that particular type of cancer with that particular surgery and pathology finding.)

    For some individuals in any given group, chemotherapy may shorten the lifespan. For a larger number of individuals in that same group, chemotherapy will extend their lifespan. It’s up to each individual in that group to make that choice for themselves.

    An individual who cares a great deal about long-term damage from chemotherapy and not so much about living longer may decide that the odds ratio supports rejecting chemotherapy. For instance, I’m a depressive with no children. I would be quite nervous about adding chemo-brain to my cognitive burdens, and I have no overriding commitments. I might decide to take the chance of refusing chemo. A parent of children under 25, however, might be extremely motivated to stay with their children until they could see them safely settled with families of their own, and any negative outcomes from the chemo would be worth the additional hope of an extended lifespan. They would choose the chemotherapy.

  60. Dr. Gorski and other SBM contributors – Both of my parent’s had palliative chemotherapy* for advanced cancer. In both cases the side-effects were bad. I can’t say I ever really understood the benefit. This is not to say that I don’t believe there is a benefit, only that I don’t understand what is being accomplished. I think palliative chemo is poorly understood by non-medical public. If one of the doctors here is ever looking for something to write about I would be interested in reading an article on this topic.

    *My grandma, always the one for apt mispronouncations, called it cremotherapy.

  61. Dawn – Thanks! even if you are not a possible bone marrow donor (I’m not a medical persona, not sure if blood pressure would or not be an issue) it’s great to pass the word on. A lot of people don’t know about the program.

    Basically, they do a screening interview, if you qualify, they take a blood sample, usually done while donating blood. They then keep the results of the sample on file. When someone needs a transplant and has no known match, such as a family member, they can look for a match in this database. They then call the donor and arrange for further screening, etc. Apparently the same registry is also matching for peripheral blood stem cell (PBSC) donation, which is a non-surgical donation.

    Best, Michele

  62. Dawn says:

    @micheleinmichigan: Cool. And thanks for the screening info. I don’t know if my blood pressure issues would be an issue for this. (I am a medical persona but as a nurse-midwife, it was rather out of my field of expertise).

    From one (former) michigander to another!

  63. Th1Th2 says:

    “If you can donate blood you might be eligible to be a bone marrow donor and save someone’s life or maybe you can help the bone marrow donor program in other ways. You can find out more at http://www.marrow.org

    That’s not called ‘saving someone’s life’ but rather a desperate attempt to repair an embarrassing iatrogenic effect.

    The Religion of Modern Medicine has really learned its lesson from the Church on how to persuade those suckers to ‘donate’ their healthy marrows.

  64. TH1TH2 – That’s okay, you can have my healthy marrow or peripheral blood stem cells, even if you are embarrassed.

    And thanks for giving me the opportunity to talk about this organization. I wouldn’t have thought of it if it weren’t for your comment. :)

  65. pmoran says:

    Elliander: “What you don’t seem to understand is the whole objection I have: Why take a certainty of long term potentially permanent damage with the possibility of death… simply to prevent a possibility of death? I just can’t wrap my mind around why anyone would choose certain ill health like that.”

    “What you don’t seem to understand” is that concerns such as yours are already built into the system.

    Have you grasped that there are three basic settings in which chemo is recommended?:

    “curative”, where the hope is to cure a cancer that cannot be treated in any other way,

    “adjuvant”, where many of the patients are already cured by other treatments, but we hope to cure more of them,

    and

    “palliative”, where the hope is merely to prolong life and relieve symptoms in usually incurable cases.

    These involve very different considerations in terms of patient selection and in the type and aggressiveness of the chemo that will be used.

    Because adjuvant chemo for some kinds and stages of cancer, e.g. stage l/ll breast, will inevitably be given to many patients who are already cured (we just don’t yet know which), the chemo regime is selected so as to be generally very well-tolerated by patients and to have minimal ill effects either short or long term.

    You don’t have to take my word for it — do some study and you will find that many different chemo regimes are used depending on the clinical setting, also that there is a great deal of information on short and long term side effects. Find some women who have had adjuvant chemo for breast cancer, and most will tell you they were surprised how little it bothered them. They have heard all the horror stories, too, either exaggerated or referring to problems with more severe, curative regimes.

    Also, dying cancer patients look that way whether they have chemo or not. Very often they too will be given purposely very gentle regimes, as a last-ditch effort to buy time or to relieve symptoms.

  66. Chris says:

    Elliander, so you posted a second website to dilute the inanity of the whale.to? It was an anecdote of one child. That is not data. Here is a website with several other anecdotes:
    http://www.ariplex.com/nmwiki/index.php?title=Victims_of_new_medicine

    They are also not data.

    Especially since cancer is not just one disease, but several, each with its own causes, symptoms and reactions to therapy (some do not even require chemotherapy).

    Treatments have changed much over the past few decades since my father’s cousin died from a broken blood vessel in his brain as he was vomiting due to the chemo to treat his stomach cancer (his mother had also died from cancer in the 1930s when he was a child). They do treat each person depending on their age and type of cancer. Our local barber’s son is a live adult after going through cancer treatment over a decade ago as a child, yet my step-mother died within two weeks of being diagnosed with lung cancer when she was 82 years old (she saw no point, so she received palliative care and died at home).

    In the future use your father’s medical books or references from PubMed if you wish to be taken seriously. I would also suggest you skip the random capitalization because it is very annoying.

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