
Every Cancer Patient Is One in a Billion - mighty-fine
https://www.wsj.com/articles/every-cancer-patient-is-one-in-a-billion-11563835958?mod=rsswn
======
killjoywashere
Yep, if we really want to cure cancer, we need to go back into the tissue
archives and study every single cancer that's ever been diagnosed, at the
molecular level, to start getting our heads around what really happened to all
those people. 10 million people a year. Every year. For a the last 6-7 decades
of chemotherapy.

Meanwhile, there's this perverse medicolegal incentive to retain the excised
tissue samples for the minimum necessary period of time, which is 10 years for
US laboratories accredited by the College of American Pathologists.

You heard it right, the lawyers won. We spend medical administration time
filling out medical administrative paperwork to spend medical care dollars
burning most of the cure to cancer. Every year.

~~~
refurb
What would be the value in finding a cure for cancer for a patient who is
already dead if that patients particular mutation is unlikely to be found in
another person?

~~~
cannonedhamster
As has already been stated you can use the prior tissue to better
individualize current treatment. For example I'm a really rare patient, most
people in my situation are already dead by this point in their treatment.
Chemotherapy worked so well most of my primary tumor was gone within days and
they haven't seen it since my 6th treatment. They still think it's there but
it's generally too small to be seen. They didn't save the samples from my
cancer to figure out why it worked so welln or why I've been able to handle
aggressive treatment for far longer than average with minimal side effects. No
hair loss, minimal nerve damage, etc. If that information could help even one
other person, I would want it out there. I've contributed to every study I can
be a part of and consented to every bit of sharing of my generic material I
could, I only wish I could do more. Nearly everyone with my same diagnosis at
the same time as me is dead. Speaking just for myself, being able to
contribute to keeping other people from ever going through this means the
world to me.

~~~
magic_beans
What kind of cancer did/do you have and at what stage did you begin treatment?

This is truly astonishing, by the way.

~~~
cannonedhamster
I'm stage 4 Stomach cancer, started there because it's super aggressive, the
OS for 5 years at stage 4 is 5% at last reading, based on my current treatment
outcomes I've got at least another year in me based on available treatments as
I'm still first line and the cancer is still responding to chemo. I'm aiming
for 10 years, because go big or go home right? It was all through my
periodontal cavity, but apparently aside from the primary tumor my cancer
cells are too small to be seen on imaging, PET or CT. I'm apparently supposed
to be dead already, and yet here I am kicking around. I get "you don't look
like you have cancer" a lot, because I'm on the bigger side. It was the best
damned weight loss program I was ever on though, lost 60lbs before my first
chemo. It took me a while to realize just how stupendously lucky I was. Every
single day I wake up terrified that it could be my last and every single night
I go to bed terrified I might die in my sleep. Every treatment has a risk of
death, or get this, causing new cancers. I'm heading into my 16th treatment of
5FU and just recently dropped the Oxaliplatin, which causes permanent nerve
damage in most people, but it's way better than death, which it can also cause
if you have a bad reaction. I've been planning out a Youtube channel for
younger people like me who get cancer, and I suppose older people would
appreciate it too. I've missed very few days of work over this whole thing and
it's been mostly an inconvenience. I've got mostly good days, been way more
chipper since getting diagnosed oddly enough, I have some bad days, and nights
I straight up cry in the shower so my wife doesn't see. I think the best thing
about getting cancer is that I have an excuse to make people in a cancer ward
laugh with my dark humor and no one will say anything because we all need to
laugh, it's the only time that constant nagging in your head about how close
you are to death seems to go away. I suspect that's kind of like soldiers in
long-term dangerous deployments, there's a lot of waiting and everything is
normal and you get into a routine, and then without warning you're in danger
and everyone's moving and serious, and there's no time for jokes because
everyone's just trying to focus on staying alive. But again, I'm one of the
lucky ones. I'm still lucky enough to have the privilege to worry about this.
I'm still lucky enough to wake up and see the amazing person my child is
becoming. I've been lucky enough to be able to finally push myself into doing
the charity work I've always wanted. I want everyone to have the opportunity
to feel this lucky.

~~~
magic_beans
Wow. You are incredible.

~~~
cannonedhamster
Eh won't go that far myself. I'm here because I've gotten a lot of help along
the way when I've really needed it. I just try to give back in whatever way I
can with the time I have left. I have good days and bad days still. It's just
about not letting the bad days be more than the good days.

------
Roritharr
Ironically, living in Germany makes me scared that I won't be able to pay for
a therapy by someone like Dr. Nagourney as our governmental health insurance
providers are very eccentric when it comes to paying for treatments.

That combined with my high tax-rate and only slightly above average salary
means I won't be able to save enough money to afford it to send a loved one to
him when it becomes necessary. That is crazy scary to me.

A programmer from close to my area had to publicly raise funds (~350k iirc) to
send his 2 year old son to the US for a surgery that saved his life, but which
no hospital in Germany dared to perform.[1]

[1]
[https://www.facebook.com/hilf.david/](https://www.facebook.com/hilf.david/)

~~~
thiago_fm
I'm a developer who has been living for 4+ years in Germany. Does that mean
that it is a good idea to perhaps change to private insurance?

I thought that when I get old here, as I pay all those fucking taxes, I would
get a good treatment for whatever diseases I may have until it's my last day.

That sucks. I feel ripped off.

~~~
gmueckl
I think the OP is confusing a few things here. Public health insurance will
always pay for whatever treatment you need. Age is only a factor in very few
cases. What matters is that the doctor or hospital is also in Germany. The
system allows you a huge amount of freedom in choosing who to get care from.
But the system doesn't cover getting care from foreign facilities. Private
health insurance policies have the same restriction.

~~~
Roritharr
That's precisely my point.

I don't get much freedom when it comes to international healthcare and won't
be able to save enough to pay out of pocket/take a loan for something as
dramatic as this. The only insurance answer to this is a Dread Disease
insurance which pays out once specific illnesses appear, but the amount and
illnesses are completely dependent on your financials aswell, so you're still
worse off in this case compared to simply earning more in the US.

It's great that I don't have to fear going to the hospital for normal stuff,
but everything extraordinary is very scary as our public healthcare system is
simply crumbling, getting appointments for specialists can take months,
hospitals are overcrowded (my mother was taken by an ambulance to a hospital
due to a heart condition, only to be ferried further as all beds were full
that night) and doctors and nurses are working themselves to the bone or
simply leave the country outright.

~~~
xenonite
I don’t know about the German insurance, but for example the Swiss insurance
makes a specific exception: in case there is no adequate treatment or
expertise available within Swiss borders, the insurance must cover a foreign
treatment.

~~~
Roritharr
Sadly, as shown in my linked case, that isn't the case here. The boy would
most likely have died if his parents didn't publicly raise the funds
themselves and pursued the therapy in the US.

------
1e-9
Although there tends to be great molecular diversity in each person's cancer,
there are still avenues of genetic commonality that can be pursued. For
example, the tumor suppression gene TP53 is mutated in a high percentage of
cancer cases. If this mutation can be reliably repaired, our ability to treat
a number of cancers could be significantly improved. There are recent results
suggesting that this may indeed soon be the case (for example, treatment with
APR-246).

------
signal_space
Many cancers are heterogeneous. Once a malignant community forms the
established organized population deteriorates into chaotic competition.

~~~
asdfman123
Wait, are we back to talking about how to organize programming teams again?

~~~
leggomylibro
Well, you do hear humanity likened to a cancer fairly often. Look at what we
do to other species, and we're even trying to metastasize to other planets.
Lucky for us that this universe doesn't go in for it's millennial checkups,
huh?

~~~
stcredzero
If cosmic things had millennial checkups, they'd be cosmic-scale in their
hypochondria. That would be like me getting a checkup every second.

~~~
lioeters
I wanted to find out the unit of time of "every billion years" \- first
thought was "billennial".

Apparently, a millenium is otherwise known as a kiloannum; a megaannum is a
million years, and a gigaannum is a billion.

So, a reasonable universe should be getting gigaannual checkups.

------
narrator
The book "Tripping over the truth" is a great history of the failure of the
genetic mutation theory of cancer to cure cancer. It argues that it's a dead
end and we should go back to exploring Otto Warburg's metabolic theories.

~~~
killjoywashere
Warburg's metabolic theory is an important part of current cancer care and
many prospective efforts. However, tumor metabolism is an effect, not a cause.
The simple-as-possible-but-no-simpler model of cancer is that mutations occur,
breaking the blueprint code for cellular processes. In most cases this leads
to cell death. In rare cases, the mutant survives and either fails to
interpret a death signal or over-interprets a growth signal, or the growth
switch is constitutionally activated. This leads to more mutations and some
number of daughter lineages also survive. This all stems from very straight
forward underlying rates of mutation predicted by the laws of thermodynamics,
requiring no other input. There are plenty of example problems available to
work through on Rosalind.info.

That is, cancer is a disease of information. And this is extremely compatible
with the genomic evidence in every cancer we've encountered, many, many times
over. Viruses you say? They insert into the genome and interfere with normal
cell processes. UV radiation. Chemical exposures, oxidative stress, etc, etc.
Those are intermediary chains of causation. Interesting for specific examples
(wear gloves, wear sunscreen, be careful about sex, etc).

One of the blueprints that tends to fall apart is the complex aerobic
respiratory pathway, including the Kreb's cycle, etc. But there are other,
usually latent energy pathways, like glycolysis, that are available. It is the
loss of aerobic respiration that unmasks the glycolysis pathway and all its
associated inefficiencies and metabolic stress effects.

------
leafeewick
Would open sourcing all cancer research and allowing anyone to contribute and
share in the open source community... would that assist in potentially finding
a cure/treatment for various cancers or would the profit motive be required
for these research to be successful?

~~~
rolltiide
There are a few case studies on that

Protein folding and grid computing networks are based on altruism and
enthusiast novelty interest “wow I can use my spare computational power on
this global network of other enthusiasts to cure cancer”, you know, novel in
2004.

As soon as some enthusiasts introduced cryptocurrency to these networks, see
Curecoin and Gridcoin, users of those quickly became the most significant
contributors to those networks (until those particular crypto currencies’
economic models fell apart). It wasn’t “spare computational resources” it was
capital investment for a yield in those digital assets. I believe there are
communities still experimenting with this regarding protein folding and
looking for mutations iteratively.

So a profit motive will always beat out a non-market based approach, which
isn’t really news

~~~
someone7x
> So a profit motive will always beat out a non-market based approach, which
> isn’t really news

Call me a dreamer, but I wonder if that would remain true in a UBI-style
environment?

~~~
rolltiide
if there is a scarce useful resource being used and acquired then yes?

~~~
gmueckl
I think people would be tempted to try more and crazier things to earn more
money because the risk of failure is lessened in that scenario.

------
abrax3141
[https://mobile.twitter.com/AmandaHaddock/status/922493664856...](https://mobile.twitter.com/AmandaHaddock/status/922493664856760320/photo/1)

------
neonate
[http://archive.is/VESVr](http://archive.is/VESVr)

------
benkarst
Paywall :/

------
droithomme
_> Since there are some 1,000 cancer-related genes and each cancer requires up
to three distinct gene alterations to succeed, every cancer patient is
literally one in a billion._

Errors in his math:

\- not every combination of any of the 3 genes (1000 _999_ 998 = "1 billion"
ordered combinations) causes cancer

\- the order doesn't matter

\- the occurrence rates of each mutation are not the same and don't appear in
the same rate among various populations

Thus, the number of kinds is much smaller than 1 billion, and many people do
have the same type genetically.

------
rolltiide
Holistic practitioners should all be studying machine learning.

They were right about the problem of not having individualized medicine, way
off with the solution. Now they can win with data

------
coding123
If we really want to cure cancer we should stop polluting our air, water and
food. And even if we can't stop we need to find ways to disincentivize making
products that require our air and water to be polluted. For food:

[https://www.basicknowledge101.com/subjects/verticalfarming.h...](https://www.basicknowledge101.com/subjects/verticalfarming.html)

~~~
cannonedhamster
Cancer has always existed regardless of pollution. It's cell mutation, which
is part of evolution. You can't fix it by getting rid of pollution. You fix it
by making your own immune system recognize it again so that it can not the
cell properly. Either that or restore the proper cell death instruction.
Cancer deaths have been going down for years, firstly due to less smoking and
less salted meat in our diets and now due to better understanding. It's slow,
but it's steady and every oncologist in the world is waiting for the hockey
stick moment.

~~~
rjf72
There was an interesting study here [1].

They researched the prevalence of cancer in ancient societies using a variety
of methods - remains, reporting, etc. The goal was to determine whether the
relative lack of cancer in ancient societies was driven by some sort of
external factor such as inability to detect cancer in remains, poor reporting,
lower life expectancies, etc or rather it was simply because cancer was simply
much less common. The evidence available tends to point very much towards the
latter which, in turn, suggests that we have created environmental conditions
which are driving cancer. The paper references two papers which have pointed
to general pollution as a major potential driver there.

Death rates are not a relevant measurement on this topic either since they're
heavily confounded by increase in survival rates. You need to look at incident
rates, which continue to increase worldwide. Even lung cancer is now on the
rise among females.

[1] -
[https://www.nature.com/articles/nrc2914](https://www.nature.com/articles/nrc2914)

~~~
gmueckl
How does this paper account for the increase in life expectancy? Many types of
cancer appear in people of older age and reaching that age was not nearly as
common in ancient societies.

~~~
rjf72
Two ways. By looking at the causes of death of those that did live to old age
as well as by considering cancers (such as bone) that tend to occur
disproportionately in young people.

~~~
wasdfff
I think the study is biased towards cancers that are visible in the remains.
If you died from leukemia, would that be evident based on your skeleton?

~~~
rjf72
I do not know the answer for leukemia but this is another issue that was
considered in the paper.

If people are put off by the paywall: [https://sci-hub.tw/#about](https://sci-
hub.tw/#about)

~~~
cannonedhamster
Literally the _only_ thing they seem to say for sure in that paper is that
they expect to see bone evidence they don't see. While I don't doubt the
earnestness of the paper's authors, their primary study seems to be in
Egyptology first. They practically gush about how the ancient Egyptian
medicines are still in use today...but then only list ones based on papyrus.
They don't account for the fact that our sedentary lifestyle is shown to
increase cancer rates, they barely explore different cultures, with only a
passing reference to Greece, who has numerous treatments, including excision
to remove cancer, and admit that the ancient Egyptians didn't even classify
benign tumors differently than no-benign. They don't account for the increased
consumption of meat in a western diet. They don't account for massively higher
numbers of humans.

Based on their paper alone I can think of at least 5 other hypothesis that
they didn't even cover.

1\. Periods of fasting and lack of food decrease cancer. 2\. Less sedentary
lifestyles decrease cancer risks(this has actually been shown to have some
promise, with HIIT workouts showing improved response rates and decreased
reccurance) 3\. Decreased infant mortality caused an increase in
susceptibility to cancer because weaker physical specimens are surviving. 4\.
Firearms. Cancer rates have increased with the output of firearms. 5\.
Decreased prayer to the Egyptian gods. As these gods declined cancer rates
increased.

Some of these are obviously less serious than others, however it doesn't
excuse the plausible possibilities. These aren't oncologists, their
paleontologists, also known as historians who guess about things based on what
they dig out of the ground.

~~~
coding123
[https://www.nytimes.com/2015/08/14/world/asia/study-links-
po...](https://www.nytimes.com/2015/08/14/world/asia/study-links-polluted-air-
in-china-to-1-6-million-deaths-a-year.html)

[https://dceg.cancer.gov/research/what-we-study/drinking-
wate...](https://dceg.cancer.gov/research/what-we-study/drinking-water-
contaminants)

[https://www.theguardian.com/us-
news/2019/may/01/california-t...](https://www.theguardian.com/us-
news/2019/may/01/california-tap-water-drinking-lifetime-contamination)

[https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2782753/](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2782753/)

To sum up - cancer is driven by our environment, not just random mutations. As
commented by others - we are doing a lot more to our environment and food
sources to drive cancer (and other health problems) than random chance.

This link is for fun:
[https://www.youtube.com/watch?v=wVnMBGXVVUI](https://www.youtube.com/watch?v=wVnMBGXVVUI)

