When given the diagnosis ‘CANCER’, most people go into some sort of shock. Once they have recovered, they are likely to learn that they now face many months of very aggressive treatments which will reduce their quality of life to almost zero. This, they are told, is no guarantee but will merely increase their chances to survive the cancer.
Understandably, before they make what might be the most important decision of their lives, patients are desperate and tempted to look elsewhere to find out for themselves what their options are. It would be foolish to simply accept what their team of health care professionals have been saying. With decisions as important as this one, it is wise to listen to second and possibly third opinions. Who could argue with this logic?
Most cancer patients then go on the Internet and have a look at what alternatives are on offer. Here they find virtually millions of sites offering information. A person with pancreatic cancer might thus be unfortunate enough to stumble over a site called What Alternative Medicine works best against Pancreatic Cancer? If she does, her life is at risk.
You think I am exaggerating? In this case, let me quote from this website (I made no changes whatsoever, not even corrections of the spelling mistakes):
Just to remind you this particular thread is concerned with alternative treatments for cancer. People here are seeking information about alternative medicine. Now we all know that immunotherapy represents potentially a great leap forward in the treatment of cancer in the mainstream medical community although the stats are still pretty low for repsonse most of which have been done on melanoma patients. Nonetheless impresive compared to the useless toxic treatments peddled by the drug industry over the last 30 years. Interferon being one of the worst treatments inflicted on many a poor cancer patient along with chemo and radiation for which many cancers have little or no response and are extremely toxic. I make no false claims about the work of Dr Kelley or Dr Gonzalez for that matter. For those willing to dig a little and research their work they will find a body of good evidence for their protocol.
You might say that this is an extreme exception of irresponsible, life-threatening misinformation. But I disagree. The Internet is full with sites of this nature. They promote treatments for which there is no good evidence; what is worse, they encourage patients to forego conventional treatments which might save their lives. If anyone then dares to point this out, he will be attacked for being in the pocket of ‘Big Pharma’.
I know, a little insignificant post like mine will change very little, but I also feel strongly that, if I do not keep banging on about this issue, who else will warn patients that misinformation from the Internet and other sources can kill?
Of course, one of many points that homeopaths refuse to engage with is that most of us who haven’t fallen into this delusion know full well that not all proper treatments are pleasant, or work all the time, or for everyone. Most of us are not mad enough to make such a claim.
I’ve been accused myself on a couple of occasions of being in the pay of ‘Big Pharma’ as a result of comments I’ve made, despite the fact that the closest I’ve ever been to this misty organisation is the 2 girlfriends I had who were pharmacists, a friend who was a nurse, and an extremely high-ranking doctor.
Which then of course leads to them being sneeringly referred to as my ‘pals’ in the medical establishment.
And of course none of these people cares to come forward with any evidence that people like me are in the pay of ‘Big Pharma’ or anyone else for that matter
A few of us have been engaged recently in ripping the piss out of a deranged homeopath on the Quackwatch site who complains that people such as he are not happy about the constant sarcasm and ridicule they undergo, and therefore are ‘shy’ as Boris Johnson might put it of exposing themselves to such.
I think the organisations you mention above deserve nothing less.
Something else one finds very easily on the Web is a huge number of posts about the spectacular improvement in cancer survival rates achieved by medicine over the past 40 years. I find it depressing to keep reading aggressive comments on this blog suggesting that chemotherapy and radiotherapy are useless and only ever kill people. The very clear evidence shows they play an important role in the survival improvement story for many types of cancer but, as the original post so eloquently puts it: patients “are likely to learn that they now face many months of very aggressive treatments which will reduce their quality of life to almost zero. This, they are told, is no guarantee but will merely increase their chances to survive the cancer.” The rate of progress is not fast enough for some.
Big Snakeoil preys on people with terminal illnesses, offering unjustified reassurances like the one in the comment cited in the OP. There is something perverse about the ease with which people can fool themsleves. There is no surprise when a person dies after being hit by a truck, but the opposite is true when a terminal illness strikes.
“… if I do not keep banging on about this issue, who else will warn patients that misinformation from the Internet and other sources can kill?” This may be your most important remark, Prof. Ernst. On thread after thread in your blog you will read precisely the same comments being made, over and over again. “Medicine kills (insert large number of your choice) patients every year.” “I suffered from (insert disease or symptom of your choice) and (insert witchcraft of your choice) cured me.” “Here is a published paper which proves clearly that (insert witchcraft of your choice) is effective.” “Your opposition to (insert witchcraft of your choice) attempts to deny patients their freedom of choice.”
The responses are also repetitive. “You need to weigh benefit as well as cost when judging therapies.” “The plural of anecdote is neither data nor evidence.” “Cherry-picking one (bad) paper proves nothing.” “Patients need to have freedom of informed choice, not freedom to sacrifice themselves.”
Do keep banging on, Edzard. The people who read today’s thread and just might see the light will be replaced with a whole new set of people by the time of the next thread. Governments have been banging on for years about the dangers of tobacco smoking. Slowly, painfully slowly, the message gets through.
Unfortunately, governmental – and other – information about the dangers of smoking may well have reached its limits. If I am not mistaken, smoking is on the rise again in certain parts of the population, such as young girls.
It is often discouraging. Witchcraft like homeopathy was close to extinct. In spite of this (claimed) “wonderful and effective alternative therapy” no longer being popular, general health and life expectancy have gone up. How positively idiotic does one have to be to not understand that homeopathy cannot reasonably be seen as the cause? Instead, homeopathy is being glorified and its popularity seems to be growing.
Last Sunday during a car trip, I talked about how homeopathy is unethical as it requires practitioners to lie to their patients, and I got an earful. It only stopped when I stopped speaking for a while. Yet, two of the people who were in the car are in deep trouble, in large part because of a deep belief in quackery that has lasted for close to two decennia.
I can’t help but wonder if we are not too much concentrating on quality – and are therefore flocking to sites such as Prof. Ernst’s – and if it would not be a better thing to start up our own blogs en masse, even if we don’t spend much time looking it all up for ourselves, and spend more time writing about (perhaps even merely regurgitating) what people such as Prof. Ernst have already found out anyway, and then linking to them.
The reason I think that might not be a bad thing, is that many/most people are using the large search engines such as Google “university” to find what they are after, and that they are far more likely to find oodles of websites with alternative bollocks than websites with reality-based information. If that is correct, even patients who are not necessarily gullible and biased towards witchcraft, have often already lost before they even start looking.
The creation of large numbers of blogs talking about and referring to quality reality-based information, such as Prof. Ernst’s, would increase the probability that patients looking for information would stumble on something that will actually help them, instead of harm them. It’s like the little white-ball/red-ball problems we got in elementary probability theory.
My own blogs are dormant right now, because of chronic lack of time, but I am certainly planning on becoming more active again. Maybe the exercise is a futile one, but I don’t see many alternatives. As long as most schools continue to avoid teaching the scientific/skeptical method in an attempt to “respect” idiotic religious claims, I don’t see much else that can be done.
Maybe it is naive to think there is even so much as a possibility, but I think it should be attempted. Who knows? Maybe this really is a case where quantity is more effective than quality.
You must remember that many think that the cancer is cured only when everything is left as before the disease. And that is exactly what so many quacks offer. And then quacks sound more mysterious, than doctors. It ought to be patient-discouraging factor, but it is not, because cancer is perceived by many as mysterious, so doctors with their “trivial” solutions are perceived by many as frauds, because mysterious diseases eradicated be killed by simple means, can they?
And such people become very angry when you start explaining them what science has learned about the cancer and how different types of chemotherapy work.
“And such people become very angry when you start explaining them what science has learned about the cancer and how different types of chemotherapy work.”
Indeed. Isn’t it curious how people flock to magic and folk-lore, but regard science as somehow evil. The fact that we use the spin-off products of science all day, every day, never seems to help one bit. Scientists and doctors are considered spooky people who kill you, whereas people who talk total nonsense and do theatrical things with a variety of props are considered sane and reasonable.
I do not totally agree with you. My husband lives in Canada. Got Stage 4 Lung cancer. He has diabetes and Depression.
We found a mix on the Internet to use Bicarb of Soda and it is now more than a week that is Sugar is down to normal that he stopped using Insuline injections. It is more than 2 weeks that he is totally off the anti-depressant medication. His mood-swings are gone.
He feel much better. His last cancer test shows that it did not grow larger.
We will know for sure in 3 months time if the cancer is getting better. But this is the info I can share as this is still in progress.
To make the people fear alternate natural meds in the place of chemo is downright selfish.
But after all – our Heavenly Father’s input is still the best and He can do everything. Nothing is impossible for Him. And no disease is incurable.
Only have faith.
“Nothing is impossible for Him.” Funny how he never regrows the limbs of amputees, isn’t it?
I keep telling people obsessed with boosting their immunities: unless you are told what is going to be boosted and exactly how, you should ignore it. And even if promoters of these costly interventions are providing some specific details, learn about them first to understand the essence. You need not be a trained physician to spot problems. Just stop being a sheep.
And, after all, there are, for example viruses. Like Rigvir, discovered in the 1960th and very much ignored by the Soviet leadership – it works to certain extent in case of some tumours. And it is not very toxic, infection usually manifests as diaorrhea, therapy can have more side-effects, but not necessarily,,,,
As I have had the displeasure to experience last Sunday, it is not only on the Internet either. Uneducated and/or gullible individuals utter this kind of fantasy in such a matter-of-fact kind of way it makes my toes curl and my hair stand up. It is so sad, even more so since it is really not that difficult to distinguish between claims that are utter bollocks and others that have a least a chance of being true.
You may be doing this site (which is actually http://www.cancercompass.com) an injustice.
The first reply in the discussion, replying to the question posed was:
“Hi Krystle, I’m so sorry about your mother. Pancreatic cancer is one of the most difficult cancers to treat especially at advanced stages with metastisis. Brain, lung, liver are also very difficult with relatively poor survival rates. My wife has had stage 4 lung cancer for 39 months and is one of the fortunate ones doing very well on the new immunology types drugs (Opdivo/Nivolumab). My cancer studies and being a 24 hr retired care giver, my research shows there are no alternative medicines that are effective against cancer, but some might help for end of life care. There is lots of money to be made by mostly phoney cures and treatments, beware and don’t waste your money. Be sure her doctor is aware of any nonmedical products she is taking. Main stream medicine is the only hope. Some of the alternaitve treatments and perhaps products might help relieve discomfort, etc, but none of them attack the cancer. Postive thinking, relaxation, good nutrition etc. of course are helpful to the patient. Previously the traditional chemo’s, surgery and radiation were the only hope for improvement but now the immunolgy drugs offer more hope to some. Some of these drugs are now FDA approved but many are still in the clinical trial stage. Usually only the largest and best cancer hospitals and clinics have access to the trials. Your mom sounds as if she is beyond any more treatment but here is a link for you info. All the best to you and your mom. Your loving support is very important. Chuck”
Other comments in the discussion had very similar attitudes.
The question is: How many people will read this, after that introduction in the article?
A site named “cancercompass” talking about how evidence- and science-based therapies are just toxic, but useless, should not get an free pass just because they allow comments critical of their approach. The name is chosen with the idea in mind that patients will consider it a source of directions, of answers for their questions, the questions about life and death that fog their mind. And if they find this rubbish there, then the site must be made responsible.
Also, I somehow tense up when people suggest “positive thinking” to cancer patients. When they already think positive, this may help reinforcing their attitude. Otherwise it just places pressure on them and overemphasises the role of positive thinking in therapy outcome. And the sometimes bleak outlook of, e.g., pancreatic cancer is something you better not whitewash, otherwise you’ll lose the patient’s trust. They are not dumb and blind.
I have no doubt that positive attitude is a factor in survival. But not because positive thinking would make the tumor go away. That is just magical thinking and it is something we should avoid inducing in patients. They must be and remain sceptical of what they are offered in terms of treatments, not only but most specifically alternative treatments, which often play just on this magical thinking in their offerings.
I have only purely anecdotal evidence (n=1), but I think that the value of positive thinking is in compliance. A patient who has a positive outlook on one’s own benefit from the treatment will most probably be able to endure the psychological and physiological burden it places on her better than someone without such a positive attitude.
However, positive thinking is nothing you can induce by standing in front of your mirror every morning and repeating “Everything will be alright.” That’s just pushing your doubts away, and they will resurface – at the latest after the next not-so-positive restaging. And then they might be accompanied by an new doubt: “Didn’t I think positively enough? Am I at fault?”
Thanks for sharing…..Check this too…
“If a patient has been diagnosed with an unusual cancer or if the doctor has confusion whether it is truly cancer then a second opinion from a pathologist who has expertise in this field is the best way to determine the condition and decide upon the best treatment. There are certain kinds of tumors that are difficult to diagnose. For example, sarcomas – it is an uncommon cancer of the soft tissues such as fat or muscles and it can be complex to identify or classify. A general pathologist may not be familiar with cancer of soft tissues. Major medical centers that deal with rare and unusual tumors are a better choice for second opinion.
John E. Tomaszewski, MD, FASCP, vice chairman of Anatomic Pathology-Hospital Services at the University of Pennsylvania School of Medicine says “Anytime there’s uncertainty, it’s always fine to get a second opinion.” “Pathology is like every other area of medicine. There are things that are very clear and things that are on the borderline.”
Advertising your own services?
It’s my own services sir….