
The Kafkaesque Process of Cancer Diagnosis - dnetesn
http://cancer.nautil.us/article/239/the-kafkaesque-process-of-cancer-diagnosis
======
taforthis
I actually had a decent experience with this. Ended up being esophageal
adenocarcinoma, stage III, which isn't the worst type of cancer, but doesn't
have a great prognosis either.

The idea that it's not official until the patholigist says so did hold,
however...

From the moment cancer was a possibility, my primary care doctor let me know.
Let me know which types were possible, a short overview of each, and also what
else it could have been...less concerning things like maybe a hiatal hernia,
for example.

The GP sent me to another doctor for the endoscope, to look inside my
esophagus, and that doctor gave me a similar overview. Then, right after that
procedure, was very frank, something like "You know I can't say for sure, but
it does look like cancer to me. The next step is pathology and a cat scan, and
we'll know for sure within 4-6 days or so". He even fast-tracked me for these
next steps by admitting me to the hospital so that the tests would be done
quickly, versus the slower outpatient route. Just a few hours after the tests
came back positive, they had an oncologist assigned, who again, was as polite
and frank as he could have been.

So, while it may remain a crappy process in general, there are doctors out
there that seem aware of the tension and anxiety and do their best to help.

PS: I'm a year past it all (chemo/radiation/surgery) now, and while it can
still re-occur, I'm looking clean thus far. Also, this type of cancer is
driven by long-term chronic acid reflux, so if that's something you have, and
you're 40+, get yourself checked. Most people find out too late to do anything
about it.

~~~
darod
I was diagnosed with stage 2 colorectal at 33 which became stage 4 a few years
in. I've been in remission for a year but I can't help but feel that 30 is the
new 40 with regards to cancer. May be that mother nature trying to get a grasp
on our population. I hear more and more cases of people getting it younger and
younger.

~~~
oh_sigh
What signs or symptoms did you have before your diagnosis? I'm curious it was
found out, because AFAIK usually colorectal exams aren't recommended until 50+
(unless you've had other cancers).

~~~
darod
Blood in my stool was my sign. By that point it was already at stage 2. My
family has no history as far as I know.

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bastijn
In my line of work we say: "It ain't cancer until the pathologist says so."

Basically it is a joke amongst the pathologists that no matter what MD does
the diagnosis, s/he will always send a biopt to the pathologist and ask if it
is cancer. Well, in simple terms of course.

I guess the correct moment to say you have been diagnosed with cancer is when
the pathologist tells the physician it's cancer.

Beautiful thing is neural networks / deep learning can really outperform the
pathologist now that we have introduced digital pathology. Sure they will for
some time give the final verdict but before too long AI will do the actual
diagnose with better accuracy than a human possibly could in a fraction of the
time. Reports started coming in the last year. E.g. [0][1][2]. Last one is
directly mentioning years.

0) [https://www.extremetech.com/extreme/233746-ai-beats-
doctors-...](https://www.extremetech.com/extreme/233746-ai-beats-doctors-at-
visual-diagnosis-observes-many-times-more-lung-cancer-signals)

1) [https://news.developer.nvidia.com/diagnose-heart-disease-
wit...](https://news.developer.nvidia.com/diagnose-heart-disease-with-ai/)

2) [http://bigthink.com/paul-ratner/heres-when-machines-will-
tak...](http://bigthink.com/paul-ratner/heres-when-machines-will-take-your-
job-predict-ai-gurus)

~~~
opportune
Good luck ever convincing doctors (or the general public, legislators, etc.)
to let themselves be replaced by machines. Working in healthcare, everything
ML/AI related has to be worded very carefully as something that helps doctors
spend time doing other things, rather than replacing what they do. People
aren't super comfortable with the idea of AI in medicine yet, and physicians
have a history of being extremely protectionist when it comes to their jobs.

What's going to happen when this starts becoming a reality is that doctors
will start bringing up Dr. House level medical sleuthing tales as proof that
machines can never replace physicians in medicine. Obviously this will just be
confirmation/survivorship bias, but few people even know what those terms
mean. I bet it will take decades for AI to be integrated with medicine after
it's ready to do so.

~~~
rayiner
> People aren't super comfortable with the idea of AI in medicine yet, and
> physicians have a history of being extremely protectionist when it comes to
> their jobs.

How much of this is due to the fact that the "AI" we have right now is only
competent to speed up tasks for a human? Apple and Google have invested
enormous amounts of money in GPS navigation, yet it still can't deal with the
sort of random road closures/change in traffic patterns that are common here
in D.C. For about two years, Uber's GPS directed drivers to the side of my
office building that not only has no entrance, but is on the through-way.
Drivers would blindly blow by me and sometimes ended up in Virginia.

To use a different example, circuit layout is something that seems optimally
suited to AI. Yet its still a competitive edge in the industry to be able to
manually lay out critical parts of your CPU. (Apple does it with the Ax).

To be perfectly honest, I don't see much in the way of people complaining
about computers replacing their jobs. The media, for example, is totally
unskeptical about the prospect. They focus entirely on how to find new jobs
for people. What I do see a lot is people playing up quite primitive
technology as if it'll replace humans any day now.

~~~
opportune
I've worked in a medical imaging lab before, there are currently real, working
models that are able to e.g. accurately segment organs in 3D to find info such
as volume. And of course there are diagnostic tools as well. You're
complaining about GPS apps with inaccurate information. That's kind of a non-
sequitur.

~~~
rayiner
I mention GPS routing because it's been subject to incredible investment yet
are still reliant on humans to deal with routine unexpected events.

I don't see the point of your organ example. That sort of data analysis seems
like the sort of things computers do routinely; how does that address the need
to have a human in the loop? To use a different example, software for doing
analysis of car and plane designs has been the subject of decades of
development. Yet engineering teams for new car and plane designs are bigger
than ever.

~~~
bastijn
Actually the automobile and aviation sectors are under more strict regulation
than Healthcare because the ECU software and aviation software running, when
making a mistake, does not only influence one life but many. So whilst being
added more and more in cars and planes, you will see AI faster in Healthcare
than in cars or planes. I've been in a shared European subsidiary project
recently ([http://www.emc2-project.eu/](http://www.emc2-project.eu/)) and
these sectors were always laughing when I complained about FDA. I wouldn't
want to work a single day in their sectors. They had to disable the second
core on a dual core fpga because it was not allowed. Meanwhile, I was happily
running my data science in a cloud network.

Regarding design, design is a peculiar thing potentially much more difficult
to automate than a medical diagnosis because there is only emotion attached.
For medical diagnosis for a lot of cases it is just comparing to others and
spotting the differences in the images as early as possible. Before even a
human eye can spot them. And not with one dimension but hundreds. Many
algorithms do not give the actual diagnosis, they let the doctor know this
scan deviates from the default in marked places so a doctor can assess quickly
without searching.

~~~
rayiner
> Regarding design, design is a peculiar thing potentially much more difficult
> to automate than a medical diagnosis because there is only emotion attached.

"Emotion" is not the reason companies still design airplanes and CPUs by hand.

~~~
bastijn
True. Was for the cars. The other part holds for airplanes. By the way, I know
of at least one case where a cpu algorithm steered the team on optimizing the
resistance of a plane wing (or whatever needs to be optimized there, it was a
conversation over beers). Example was that they never could have thought of
that improvement themselves. Basically you had to be very stupid to try it as
it couldn't work, until a spinoff (one of the millions of automated tries)
actually did. CPUs I have no knowledge of.

------
maxxxxx
This is a real problem with any kind of serious disease. I am watching this
with my girlfriend now. The patient is thrown into this inscrutable, faceless
and expensive machine without knowing what's going on. I wonder how much the
health outcome could be improved by treating patients more humanely.

~~~
grok2
What exactly would you consider as a "humane" approach -- it is possible that
the doctor and her/his team don't really want to be the bearer of bad news and
take refuge in the system to allow you to come to the conclusion yourself?

~~~
maxxxxx
Just act like real people. Admit that you are not sure about something, have
doctors talk to each other and not make the patient run back and forth, don't
"protect" the patient from bad news (they have no problems giving the news
that you owe 10000 dollars).

For example, if one doctor is not sure about something another doctor said,
they don't seem to be able to pick up the phone and ask the other doctor to
clarify. Instead they often assume something and work with that assumption or
they make the patient go back to the other doctor which costs days or weeks to
set up and hours of appointments.

------
loudandskittish
I love the term "Kafkaesque," but had never thought of applying to the process
of a cancer diagnosis. As soon as I read the headline alone, I got it, though.
I went through this while looking after my mother during her treatment...from
the lead up to the diagnosis, to the diagnosis to the actual treatment.

It started with the doctor at the local medical clinic being concerned about a
growth in my mother's mouth and referring her to an ENT. That appointment
would be in several weeks, then a biopsy scheduled several weeks after
that...then an appointment with the ENT to discuss the biopsy three weeks
later...meanwhile, all these doctors are talking to each other. My mother goes
to the local health clinic for something unrelated and mentions some symptoms
to the receptionist, who replies, "Yeah, those are common side effects to
chemo..." To which my mother says, "Oh? I'm getting chemo am I?" ...the
receptionist could only give an "oops" facial expression.

Then the meeting with the ENT to discuss the biopsy never happens, anyway.
Instead, my mother gets an automated phone call from the big city hospital
saying "You have an appointment with Dr. Ugonnadie at the Cancer Centre on
Tuesday."

...so, for all the secrecy and, "you need to come in and talk about this in
person in three weeks..." it gets let out of the bag by an automated phone
call. In retrospect, yeah, felt pretty Kafkaesque.

------
pinaceae
Exactly the same as explaining to a paying, non-technical customer why you
haven't found the bug at the core of his issue yet and thereby given a fixdate
is not possible right now.

It's clearly broken, so why the hell is it not simple to know whats wrong and
how to fix it?

And this is for software you've written and you have the full source code for.

Don't envy doctors at all.

~~~
jessriedel
Yea. It wouldn't surprise me if there'd be value to having a medical concierge
who would help you integrate info from different doctors. But, on my reading,
the main thing being complained about in the article is uncertainty and
doctors being unable to quickly issue definitive diagnoses. Trouble is, that's
the nature of science. Insofar as the process approximates an ideal sequence
of Bayesian updates, it _has_ to look like an unpredictable (unbalanced)
random walk.

~~~
aYsY4dDQ2NrcNzA
The medical concierge job you're talking about sounds like a private patient
advocate.

------
mmagin
Given that we will all get cancer if we live long enough (unless some
significant new technology emerges), possibly it's more useful to learn to
think philosophically of the state of healthy as being a sort of
Schroedinger's box in which we do not really know the internal state of the
system without inspecting it, since cell mutations are happening all the time
(albeit usually being resolved harmlessly) -- that you're not in some Garden-
of-Eden pure, noncancerous state ever.

~~~
nradov
If you do a detailed autopsy of most older people who die of other causes
you'll find a few small, slow growing cancerous tumors.

------
joe5150
I didn't have this experience when I was diagnosed with Hodgkin's disease in
February; I got a talk about the possibility of having cancer and was given
some documents on lymphoma by the ER physician before I got a biopsy, CT, or
even saw an oncologist. I think it went a long way toward softening the blow
of getting an "official" diagnosis after pathology. My post-diagnosis
experience with my oncologists has been anything but distant, but I spent four
weeks in the hospital seeing them daily before I started chemotherapy, so that
could be a factor.

------
mevile
Heh, I started a bad cough last week and an xray found pulmonary nodules and
my doctor ordered ct scans on Friday. Waiting on the results now. My cough
seems to be getting better, but not a fun process. I don't know how it could
be made better, they're getting data, what are doctors supposed to do while
they're getting data? Lie to you? Hold your hand?

~~~
bastijn
Not something a doctor can do, but Healthcare can. By making the process
faster shorten the period of uncertainty. Partly by optimizing the way data is
and can be shared, you would be surprised how hard that is even within a
single hospital, much worse with multiple or country/state boundaries. Next,
digitize and automate using NN and deep learning reducing the burden on
doctors allowing them to run more cases a day. We can further reduce the time
period case by optimizing reporting, especially for a regular 2 minute case
they spend most time on filling the report. Much of which can be automatically
filled.

If we cut all these times you could get a diagnose much faster than 2 weeks.

Of course next step is to monitor every day so we detect before cancer
actually manifests. Start treatment so early it never gets a chance. Using all
sorts of monitoring. Wristbands are the proof of concept, but in say 10 years
that will mature and maybe we get a constant monitoring realtime watched by a
digital MD watchdog. Who knows.

~~~
nradov
Be careful what you ask for. More monitoring and testing leads to more false
positives, more expenses, and more invasive treatments for conditions that
might never have caused any serious symptoms if just left alone.

~~~
bastijn
I agree with the first sentence but not with the latter. Right now The top 5%
of al patients accounts for 50% of the spending [0]. The public reference does
not go into depth but it closely resembles our internal studies. We also
predict that remote monitoring and early detection can severely reduce the
costs for that top 5 percent. In addition, a large group will never become the
top 5 percent. Finally, I think we can get the number of false positives under
control or well guarded at a first line of checkups.

When I read your first line I was thinking you would say "who wants to be
monitored all day". I think the ethics aspects requires attention. Do we even
want to go that route from a human perspective?

0) [https://www.linguamatics.com/blog/mining-unstructured-
patien...](https://www.linguamatics.com/blog/mining-unstructured-patient-data-
successful-population-health-management)

~~~
nradov
What is the basis for that prediction?

