
Chemo Truthers Are the New Anti-Vaxxers - dianaelbasha
https://elemental.medium.com/chemotherapy-truthers-are-the-new-anti-vaxxers-24f179f55c50
======
Ididntdothis
In my view this is a tricky issue. I agree that anti vaxxers are a bad trend.
But I think to some degree the medical establishment has brought this onto
themselves. I remember when things like yoga and meditation came up a lot of
doctors just brushed it off as total nonsense. It took a long time for them to
catch up. Same for the microbiome. A lot of traditional medicine for a long
time has claimed a connection between gut health and general health which most
doctors also rejected. Only recently the idea gets some acceptance.

If I had a serious disease I would probably also look into alternative
treatments (In Addition to the usual options) because I think most doctors
have a very narrow view on things. What bugs me for example is the focus on
fixing things vs preventing. Doctors should put much more effort into to
promoting healthy lifestyles than they do now.

In short: I am not surprised that people are skeptical of the usual medical
advice. Unfortunately some people take this way too far as the anti vaxxers
show.

~~~
mmaunder
If you had a serious disease that was going to kill you quickly you wouldn't
have time to look into alternative treatments. You would take the path of
highest success rate, which in case you havent looked at the data, is chemo
for many aggressive cancers.

~~~
sandworm101
Or the path of _any_ success rate. Yoga won't help you one bit if your apendix
is about to burst. Acupuncture has never set a broken bone or de-clothed a
crainial artery to relieve a stroke. Scientific medicine is a mirical we
should all appreciate every day. Without it, half the people reading this
probably wouldn't be here.

~~~
papermachete
Dude medicine has a failure rate as well, it's nothing that interesting. It's
clouded in economics and politics, meaning it will never be truly altruistic.
It's not much different from thinking software is a miracle. Human error is a
leading cause of death in the West.

~~~
threatofrain
Neither selfishness nor selflessness need be that pure.

------
mabbo
> According to Jobs's biographer, Walter Isaacson, "for nine months he refused
> to undergo surgery for his pancreatic cancer – a decision he later regretted
> as his health declined". "Instead, he tried a vegan diet, acupuncture,
> herbal remedies, and other treatments he found online, and even consulted a
> psychic. He was also influenced by a doctor who ran a clinic that advised
> juice fasts, bowel cleansings and other unproven approaches, before finally
> having surgery in July 2004." He eventually underwent a
> pancreaticoduodenectomy (or "Whipple procedure") in July 2004, that appeared
> to remove the tumor successfully.[175][176]

> Jobs did not receive chemotherapy or radiation therapy.

> Jobs died at his Palo Alto, California, home around 3 p.m. (PDT) on October
> 5, 2011, due to complications from a relapse of his previously treated
> islet-cell pancreatic neuroendocrine tumor, which resulted in respiratory
> arrest.

\-
[https://en.wikipedia.org/wiki/Steve_Jobs](https://en.wikipedia.org/wiki/Steve_Jobs)

It isn't stupidity that makes people not believe in medical science. Jobs
wasn't stupid. It's some kind of hubris and mistrust. The belief that _I_ know
better than an entire community of professionals who have dedicated their
lives to knowing these answers. Why, what if _actual_ the answer is the one I
want to hear instead of the difficult path?

~~~
awinder
I see examples of this all of the time especially amongst people who are
successful or highly advanced in any sort of facet of life. My theory is that
becoming advanced involves developing deep analytical skills, which it’s then
tempting to apply to all sorts of other domains. The trap is that what made
you advanced in one specialized area was years of foundational knowledge
alongside those analytical skills. I find myself fighting that impulse a lot
and have gotten better but I can easily see it going the other direction.

~~~
Ididntdothis
People like Jobs are successful because they go against the mainstream and do
what they think is right even if everybody else disagrees. And they are very
stubborn. It’s not surprising that they have the same mindset in other areas
of life. This kind of arrogance and stubbornness makes them successful but can
also be their downfall.

------
danielpal
One of the biggest issues right now, is that we have a community (doctors,
scientist, researchers) who need to backup their claims with actual proof's or
risk loosing their license/reputation vs a community of "gurus"/"self-healers"
who don't have to backup any of their claims at all. Thus the "gurus" can make
HUGE claims, that to someone sick sound much better than the conservative
claims made by doctors.

Give both groups the same voice & reach, and guess who wins.

~~~
egdod
Why isn’t anyone suing these gurus when their dangerously bad advice kills a
family member?

~~~
choeger
Because these people know how to spin their "treatment". They convince the
patient to chose their "treatment" them selves. They rarely give the
ridiculous advice directly in front of witnesses. Instead the family will
learn about the treatment from some third party, potentially the victim
themselves.

~~~
acidburnNSA
I'm at a hotel that coincidentally has 500 people from a MLM finale/training
for Essential Oils and this is what it's all about. Have the people tell their
friends and family that the oils can even cure ebola to get your 4 to become
8, 8 to become 16, etc. My SO the oncologist-in-training is pissed that they
can just say whatever and aggressively advertise their wares and she can't
even get pens from pharma companies.

------
tluyben2
This is nothing new though; gurus and healers have been saying for decades
that there are better cures (after which most people who listened to them died
and sometimes they died themselves after taking their own 'cure').

Hell, even here on HN we see people basically claiming that keto + no sugar +
fasting will prevent or cure cancer. And this is a community that wants real
proof, yet many here seem to believe that and might forgo chemo in the future
because of that belief. The thing is; most of these people (as I usually
check) seem to be in their 20s. In your 20s you are in fact indestructible in
most cases, so thinking that you will survive anything and that doing some fad
diet/cure/whatever will help you do that says or means nothing. Fast forward
30-40 years and then let's discuss that again.

Maybe they are right (but right means there is a lot of research and real
cases and there are not at the moment), but if not, i'm quite scared about how
many people here follow these half baked ideas and then basically play 'health
guru' online because they 'feel so good'. Newsflash; you always feel good in
your 20s, even if you smoke, eat burgers+pizza and drink every day, you still
feel fine because you are young. It is dangerous claiming these things
together with half baked scientific theories about cancer cells.

------
ryanackley
This is not new and it predates the internet. My wife's aunt died of breast
cancer 30 years ago. She decided to not have chemotherapy and instead opted
for self treatment via a vegan diet even though she was relatively young and
had a very treatable cancer. It happened before our relationshp but the utter
stupidity of that choice is still used as a cautionary tale among her family.

That said, I've seen two family members die from terminal cancer and in both
cases, they would have been better served by hospice rather than spending the
last year of their life in chemo. I felt like it was a money grab by doctors.
Their end of life oncology treatment cost the insurance company a couple
hundred thousand dollars each

~~~
masklinn
> That said, I've seen two family members die from terminal cancer and in both
> cases, they would have been better served by hospice rather than spending
> the last year of their life in chemo. I felt like it was a money grab by
> doctors. Their end of life oncology treatment cost the insurance company a
> couple hundred thousand dollars each

On that subject I _very strongly_ recommend Atul Gawande's "Being Mortal".

> I felt like it was a money grab by doctors.

I don't think that's what it is, and Gawande's book (where he speaks as both a
surgeon and having had relatives — including parents — go through this)
comforted me in that opinion. Rather:

* doctors generally are not trained in this sort of end-of-life care recommendations

* it's easy for a disconnect and misunderstanding to occur between, or for doctors to present alternatives but fail to notice the patient or family doesn't really understand (especially the implications of the various alternative)

* it is common for families to try for survival at essentially all costs (including intrusive and uncomfortable), and hard for doctors to disagree, sometimes at the result of (2) above but not always

* doctors are human and tend to get blinkered by what they do know, and what they do know is usually treatment

One interesting item (of many, the book is barely 200 pages but full of stuff)
is Gawande's mention of Ezekiel J. Emanuel and Linda L. Emanuel's "Four Models
of the Physician-Patient Relationship." which basically identifies a range
from "paternalistic" (doctor knows best and takes all decisions) to
"informative" (where the doctor is provides facts & figures and possibly
options but no insight).

~~~
DataWorker
This might be the best post in this thread. I think you can see a lot of the
paternalistic orientation on display even in this thread. I think it’s that
sort of hubris which causes people to react in the opposite direction and
reject the whole thing. So who to blame for me is clear, it’s the doctors.

------
sandworm101
Manditory relevant Dr Cox rant: (Scrubs - s07e06)

[https://youtu.be/RK8dMRLVWvg](https://youtu.be/RK8dMRLVWvg)

I'd type the quote, but I'm on a tablet and cannot find anywhere from which to
cut and paste it.

------
mmaunder
This is clear cut. If you have, for example,stage 4 non-hodgkin's lymphoma and
arent treated very quickly with R-CHOP chemotherapy, you will die very
quickly. If you are treated, the cure rate is 90%.

Taking the time to look around, going down to South America to take in the
airs, travelling to India to try to yoga it away, you will die. And quickly.

There are certain very aggressive cancers like NHL that are curable with a
high success rate today using, in the case of NHL, a combination of chemo and
bio agents like Rituximab.

If you aren't immediately treated you will die.

Convincing someone with one of these diseases to avoid "western" medicine
because they are lying and seek alternative treatment is essentially
participating in assisted suicide.

~~~
sgt101
It's interesting - I wonder if the advances in treatment have precipitated
this position.

My instinctive attitude/response to cancer is that it's a death sentance, and
I guess that makes me, and my generation, an probably a lot of the population
suceptable to the grift of these hucksters.

Perhaps the right thing to do is to change the classification of diseases like
NHL that can now be treated - perhaps they should just stop being "cancer".

------
generalpass
I'm skeptical of all of it.

On the one hand, the medical industry is tied so closely to government that
they are even granted immunity for FDA approved treatments. A policy which
basically assumes nobody makes mistakes.

They have made the requirements to bring a drug to market so onerous that only
the very largest companies can afford it.

The regulatory infrastructure is heavily influenced by non-medical industry
industries, such as the alcohol industry's non-stop lobbying to make and keep
cannabis a schedule 1 drug.

This all stinks so badly my default position is to hardly trust anything
coming from the establishment.

Anyone trying to make claims outside of establishment channels is generally a
near lone voice that may or may not understand what they are talking about.
Gauging their claims becomes very difficult as often it is not even legal for
others to test their claims. I would basically have to become an expert,
myself, to actually understand either side of a claim.

To make matters worse, everyone in the world is now an independent expert
everywhere on everything and they can insert themselves into every
conversation. I find most commonly people outside the U.S. commenting on
things inside the U.S. while clearly not having one clue about how the
government activities make the whole thing look and smell like a waste
treatment facility.

Then people come up with the stupid terms, such as "anti-vaxxers". This term
is now used against people who simply believe the government has no power
force people to receive injections. Government forcing this kind of thing is
going to get a bunch of people really screwed up and killed, largely because
nobody anywhere in the process is ever close to being individually accountable
(e.g., if somehow a court rules in favor of the harmed parties, they just get
paid from tax dollars, not corporate profits, corporate assets, individual
assets, and certainly no jail time for anyone).

Edit to add:

I remember reading the following quote from a parent who chose chemo for their
daughter:

"We basically tortured her for two years and then she died."

It's a very different take, but it's real.

------
dennis_jeeves
A chemo truther here, if you will. AMA about what I understand about
chemotherapy. To the best of my knowledge only very few cancers respond well
to chemotherapy - they are testicular cancer, Hodgkin lymphoma and ovarian
cancer.

If you contradict any of my opinions, before I reply to you I want to know,
your personal experience in investigating cancer therapies beyond what your
doctor, medical school or news media told you. For example:

\- Have you read at length the articles/books by mainstream train MDs who have
a different opinion?

\- have you talked to oncologists with dissenting opinions?

~~~
pmcjones
I'm glad you mention testicular cancer, which I was diagnosed with in 1982,
just as the first extended trials for a chemotherapy were completed
([https://en.wikipedia.org/wiki/Testicular_cancer#Chemotherapy](https://en.wikipedia.org/wiki/Testicular_cancer#Chemotherapy)).
My staging surgery found no metastasis, but a year later it was clear it had
spread to my lungs. More surgery, plus four grueling rounds of chemotherapy.
This spring I will celebrate 36 years without a relapse.

~~~
dennis_jeeves
Thanks pmcjones,for chiming in. I hope you live a long life.

The general trouble today more than ever is that main stream medicine is
exceedingly cartelized, commercialized and profit driven that it is difficult
to disentangle the legitimate good therapies from the one that in some cases
are downright harmful.

~~~
lostmsu
I think most people should be able to read a few papers if their life depends
on that.

~~~
dennis_jeeves
lostmsu, IMO that is not a reasonable thing to expect because:

\- Papers are hard to read and understand for even for people in the
profession.

\- For a resonantly skilled person outside of the profession (say an engineer
or physicist) it might take about 3 days to a week to read and understand a
paper fully.

\- A large part of the population - my guess easily over 50% will never be
able to read and understand a paper.

\- Papers can be fraudulent, data can be fudged, or entirely made up. The
researchers could be biased etc. I'm not saying that every paper out there
needs to be ignored, rather that the signal to noise ration is rather small.

\- Controversial findings are often not published.

------
alexfromapex
This is the classic argument of quality vs quantity. Chemo will give you more
time but severely damages your DNA, organs, etc. potentially affecting quality
of life greatly.

~~~
masklinn
Chemo truthing is not about QoL though. QoL has very much been a concern and
debate of mainstream medical ethics over the last decade or so (at least).

------
rdtwo
Chemo quality of life can be terrible and costs can be insane. Choosing to die
is often a reasonable choice to suffering terribly and going bankrupt for a
chance of survival

------
thelazydogsback
We are barely out of the dark-ages of medicine and there are fundamental
shifts in perspective every day. (Like the new link between viruses and
everything from Alzheimer's to cancer.) Even "folksy"-seeming perspectives
like the linking the gut to seemingly unrelated areas like the brain turn out
to have been correct. And as for the "anti-vaxers", I had dismissed them out-
of-hand until I spend time with several neurologists (both researchers and
practitioners) that were staying at my hotel for a conference, and after a few
drinks and stealthy nametag removal admitted they are in general not willing
to administer most vaccines to themselves or their own children. (I can do
into a few more details, but I do _not_ wish to start a anti-vax flamewar...)

------
Havoc
Well at least it's not contagious so all they'll achieve is win a darwin award

------
option
So this lovely list of people has a new group: 1) Anti-vaxxers 2) climate
change deniers 3) anti-GMO 4) anti-nuclear 5) (new!) chemo truthers

Sadly, a lot of the population are members of at least one group. Would love
to know if the membership numbers of are 1-5 going up or down

~~~
giancarlostoro
Just an FYI chemo truthers arent that new. They are older than flat earthers
which started sprawling fairly recently in the last few years.

Given how expensive chemotherapy is can you blame anyone. Theres also another
batch anti corn syrup, anti fluoride toothpaste, anti eating meat, anti self
driving cars, anti electronical voting, and so on. The list goes on. And
on....

~~~
djrogers
> They are older than flat earthers

Umm, no. Flat earthers have been around since long before we’ve even had chemo
or known what cancer is...

~~~
giancarlostoro
Well sure, but as prevalent in the media as recently occurring is what I
meant.

------
tu7001
The other I've heard was that lowering cholesterol drugs truthers or
something, are also anti-vaxxers :-D. As a libertarian, I think we have rights
to choose whatever therapy or preventive treatment as we want.

------
rayiner
> Still, a group of online cancer truthers have zeroed in on chemotherapy as
> the ultimate example of the hubris and greed of Western medicine and Big
> Pharma.

Anti-vaxxers and chemotherapy truthers are employ only somewhat more extreme
forms of the fallacious mode of reasoning that dominates today’s media. Open
up pretty much any article about a complex issue, and you’ll see the pattern.
Relevant facts will be combined with irrelevant ones and set in a narrative
arc, a story with clearly identified villains and victims. The reader knows
what conclusions she is supposed to draw based on how she feels about the
villains and victims, as opposed to objective big picture analysis.

Take a simple example: Trump’s recent proposed revisions to NEPA, the federal
law that requires government entities to perform environmental review of
infrastructure projects: [https://www.nytimes.com/2020/01/09/climate/trump-
nepa-enviro...](https://www.nytimes.com/2020/01/09/climate/trump-nepa-
environment.html). The whole thing is set within a narrative arc about Trump’s
deregulatory agenda, with Trump as the villain. Isolated quotes from
individuals are provided, making various assertions. Nowhere is there any
analysis of objective facts by which someone could evaluate the proposal. For
example, there is no mention of the fact that European countries have
environmental review rules even more streamlined than what Trump is proposing.
There is no mention of the median environmental review period of transit
projects under NEPA (6.7 years), studies that have been done estimating the
costs of delaying infrastructure projects (trillions), etc. Nothing to permit
objective evaluation, just narrative, victims, and the villain. This is how
journalists are taught to write and this is how they do write.

Anti-vaxxers and chemo truthers simply engage in a somewhat more extreme
version of this reasoning. They likewise ignore the big picture analysis.
Chemotherapy, for example, clearly causes harms, but has even greater
benefits. There are many studies quantifying those harms relative to the
benefits. Instead of looking at that analysis, they elevate the narrative
above all else. “Big drug companies,” “western medicine,” etc., are the
villains. The narrative is that those greedy players are suppressing natural
remedies out of a desire for profit. Within that narrative, a few anecdotes
about people getting better without cancer are all it takes to make the
narrative plausible.

If you read Matt Taibbi’s work, for example, is he so different? He uses “Wall
Street” and “big banks” in the same way as these folks use “western medicine.”
He constructs a narrative where the entire global banking system, and
practices employed by nearly every advanced democracy, are causing harm in the
pursuit of profit. The experts are hoodwinking you, but he and a few others
have seen through it! Throwing in a few anecdotes of misconduct or bad
behavior seals the deal and makes the narrative believable.

------
forgetfulusr
Is cancer infectious? How is this anywhere near anti-vaxxers? Don't vaccines
mainly exist to treat for something dangerous to the whole herd? Only some
small part of the herd even gets cancer.. how is this not discrediting
vaccines by even just comparing the two?

~~~
sodosopa
They’re rooted in a compound fear and ignorance of modern medicine.

~~~
forgetfulusr
That they are but one is nowhere near as dangerous to the herd as the other. I
don't see a need to lump these camps together.

~~~
falcolas
The infectious ignorance can kill those who get treatable cancer. Watching
someone die from cancer hurts those around them, leaving scars.

It’s not _that_ different.

~~~
forgetfulusr
One is to prevent the whole herd from being infected(eradicated possibly), the
other is a sick member to choose their way to treat themselves. Grievance is a
part of life, it is sad to see members go, but I can't compare between that
and the herd disappearing completely(no one left to grief).

EDIT: also I can't help but feel that this claim puts Chemotherapy on the same
level of effectiveness as Vaccines. I think all options should be exhausted
before we start claiming chemo to be as miraculous as vaccines are.

------
sashavingardt2
Why is this on HN?

~~~
RHSeeger
> On-Topic: Anything that good hackers would find interesting. That includes
> more than hacking and startups. If you had to reduce it to a sentence, the
> answer might be: anything that gratifies one's intellectual curiosity.

Given the amount of discussion in this thread, I dare say it qualifies as
interesting to a fair number of people here.

