
How Long Have I Got Left? - conesus
http://www.nytimes.com/2014/01/25/opinion/sunday/how-long-have-i-got-left.html?smid=tw-share&_r=0
======
ifktaotc
A few years ago I got testicular cancer. The information about the disease
came in pieces: first all I knew was that there was a lump; then came the
ultrasound, the CT scan, then biopsy of the testicle, then a second surgery to
sample lymph nodes to which the cancer might have spread. At every step I
would obsessively query my doctors for conditional probabilities: given what
we'd just found out, what were the chances of dying? Of relapse? Of chemo? Of
sterility? I was always incredibly frustrated at how vague their responses
would be - they'd say, e.g. "we don't like to give probabilities because you
just never know what will happen!". And I would think, "That's exactly the
point of a probability! Please just tell me a number!"

One doctor eventually showed me a paper on outcomes for the lymph node surgery
I had, with a relapse rate curve going out five years so. I found this
incredibly helpful for managing my emotions because it let me track my
progress in a very precise way: every monthly checkup that would go by
uneventfully, I knew exactly what my chance of relapse had dropped to. The
goal was to get to zero. More importantly, having actual numbers gave me
something on which I could focus my optimism. It's so much worse to hear "you
might become sterile" than "there's a 5% chance of becoming sterile". With the
5% number in mind, I'd do things like imagine myself in a room full of 20
people and think "wow, it would be incredibly unlikely to be randomly chosen
from this group". Having spent a lot of time in a cancer hospital now --
around people who were much worse off than I was -- I believe that almost
everyone has incredible reserves of optimism. I think it's better when the
hopeful possibility is concretely defined - it makes it easier to imagine a
path forward while you're stuck waiting for more information.

Mine is obviously a completely different situation from the terminal cancer
described by the author, where the question isn't, "when will I be free of
this cancer", but rather "when will I die from it". Testicular cancer is very
treatable, and I never faced a significant chance of death. I'm sure I would
have been in a much different psychological state if I had.

Also, PSA: testicular cancer is REALLY common for young males (if you're male
you have a 1 in 500 chance of getting it between 20 and 34). Given HN user
demographics, there are almost certainly some of you reading this who've
gotten it already, or who will. You can save yourself a ton of trouble if you
do a self-examination every once in a while. That's actually how I found out,
and is a big reason that I avoided chemotherapy.

~~~
saboot
> Given HN user demographics, there are almost certainly some of you reading
> this who've gotten it already, or who will.

Just checked myself .. I may (hopefully not) have proven your statement. Will
see doctor on Monday.

Thanks for the PSA

~~~
davedx
Good luck! I have had recurring epididymitis for the last 15 years or so,
starting when I was around 19, and every time I wonder if it could be cancer,
but it proves to be an infection that is treatable with antibiotics.

Well done booking the doctor visit straightaway. It took me weeks, and I was
massively stressed the whole time.

~~~
saboot
How did you know it was epididymitis instead of a tumor?

The mass I have is right on top of the gland, but after an ultrasound it
appears to be a tumor.

------
thomasz
> We never cite detailed statistics, and usually advise against Googling
> survival numbers, assuming the average patient doesn’t possess a nuanced
> understanding of statistics

When I was at the receiving end of that talk, this attitude made me incredibly
angry. They know exactly that we __will __look up those numbers, they are just
too afraid to have a honest discussion with us. People make _very_ bad
decisions because those numbers are discussed at forums, without the
involvement of people who can interpret the statistical and medical
significance of scientific studies.

~~~
vanderZwan
And would you suggest doctors would take two to three extra hours with every
patient to work them through a basic statistics class which still isn't
sufficient to explain the concept?

~~~
thomasz
Two to three extra hours is vastly exaggerated, and not that much time for
someone who needs to know the chances of dying a horrible death. I might add
that this is an objection based on _economic_ argumentation, which, while not
invalid, is not the one given by doctors. They argue like the author of the
article did: That they know better than you how you will react to this kind of
information, and that they can manage your morale by taking certain freedoms
with the truth.

I think that this is an unworthy and authoritarian approach which only leads
to distrust: How can that guy say that I will _certainly_ survive when
Wikipedia, Lymphoma.org and the fucking New England Journal of Medicine agree
that there is a one in five chance of me biting the dust in the next few
years?

~~~
TeMPOraL
I had some university classes with a doctor few years ago; he brought up the
WHO definition of health:

"A state of complete physical, _mental, and social well-being_ and not merely
the absence of disease or infirmity." (emphasis mine)

He then told that questions like "should we tell the patient that he has two
years left, and watch him and his family live the life of constant worry and
sadness (and probably of a therapy that will add a year or so to the total
lifespan, at the cost of being painful for the patient and very taxing to the
family), or should we omit that information and let him live his life out in
peace and happiness?" are part of an on-going ethical debate in medicine -
because of the need to balance the "mental well-being" part with the "absence
of disease".

Also, while telling the truth is a virtue, doing so knowing that people had,
and will, predictably hurt themselves with it seems less so.

~~~
JoeAltmaier
Sounds controlling. Who is the doctor to 'let him live his life' at all? The
doctor is there to work on the disease. The life part belongs to the patient.

Maybe the issue discussed here is with the doctor entirely - what they think
of themselves when seeing a patient respond to their expert opinion. So the
patient cries, or panicks, or leaves their family? That is nothing to the
doctor; not their business nor responsibility.

Its not irresponsible for the doctor to tell the facts, no matter how they
lead. Because the impact on the patient is not their responsibility at all.
Trying to make it so is wrong and selfish and manipulative.

~~~
TeMPOraL
> _Because the impact on the patient is not their responsibility at all._

That directly conflicts with the WHO definition of health. Which is exactly my
point. Doctors nowdays are responsible for more than just the physical well-
being, and they try to figure out how to handle these additional
responsibilities in an optimal way.

------
taylodl
_" I began to realize that coming face to face with my own mortality, in a
sense, had changed both nothing and everything. Before my cancer was
diagnosed, I knew that someday I would die, but I didn’t know when. After the
diagnosis, I knew that someday I would die, but I didn’t know when."_

Within this passage lies the meaning of life.

~~~
nightski
The logical person inside of me wants to say that there is no meaning to life.
But of course, that is not how I feel.

~~~
sdegutis
The Christian in me wants to say "hey guys, I know what you mean, I've felt
the same way, and I found a reasonable answer." But my experience reminds me
that kind of conversation is futile.

~~~
aaronem
The Christian in you is a good and honorable person; the Hacker News commenter
in you knows that such behavior is never rewarded here unless it happens to
line up with the HN zeitgeist, which has little patience with any sort of
received wisdom that doesn't agree with its own.

I find this really quite marvelous. Who could imagine such a batch of _soi-
disant_ freethinkers, who all seem to feel the same need to carefully curate
and circumscribe the thoughts they're willing to think?

~~~
rooster8
Perhaps it won't be as marvelous to you when you consider that some of these
freethinkers have spent years open-mindedly trying to integrate these systems
into their lives. Years listening to testimonials, trying to find something to
grasp onto. Yet still failed to find enough interest, passion, or problem that
it solved in their lives.

I don't have to re-install Windows 8 on my laptop once a week to re-confirm
the opinions I formed the previous week. To do so would be an irrational waste
of time. Your audience is similarly rationally choosing not to re-evaluate
until they see a new perspective on the religion or a way of addressing a
fundamental flaw that keeps them from embracing religion.

And when they argue with you, have you considered that perhaps they're trying
to push through a personal hangup they have that keeps them from embracing it
themselves? That they are not trying to put you down, but instead to
understand?

For some of us, we've already searched long and hard to no avail.

------
melling
"And then my health began to improve, thanks to a pill that targets a specific
genetic mutation tied to my cancer."

Isn't tailoring drugs to specific mutations the next big revolution in
medicine that we've been waiting for? Steve Jobs had his DNA sequenced to help
fight his cancer.

[http://appleinsider.com/articles/11/10/21/steve_jobs_had_his...](http://appleinsider.com/articles/11/10/21/steve_jobs_had_his_dna_sequenced_for_100k_to_fight_cancer)

~~~
gregpilling
Yes, I am friends with Dr. Mark Nelson at University of Arizona and he is
doing a startup in that area. [http://pathology.arizona.edu/faculty/mark-
nelson-phd](http://pathology.arizona.edu/faculty/mark-nelson-phd)

~~~
CreakyParrot
No offense, and it bothers me in almost any use, but the phrase "doing a
startup" seems especially out of its depth in this context.

~~~
dack
What's your preferred verb?

~~~
aaronem
Why not just say "starting a business?" I've never seen what is so magically
special about "startups" that they deserve to be regarded as inhabiting a
separate, higher plane of their own, beyond and above ordinary
entrepreneurship as the species has heretofore known it.

------
sdegutis
For a long time I've been pretty worried about my mortality. But ever since I
became a Christian a couple years ago, I've been much more at peace about it.
Not all the way (yet?), but much more than before. I highly recommend looking
into Christianity to anyone else feeling that same fear.

~~~
kunai
I hate to break it to you, but religion is just a ruse to help people come to
grips with their mortalities. It's extremely unlikely beyond belief that there
is any notion of heaven or hell in this universe.

I don't want to start a religious war. I just don't want you to be let down
when you're on your deathbed 30, 40, 50, 60 years from now.

~~~
sdegutis
Thanks for your sympathy. But I've done my homework. Jesus did actually rise
from the dead. Research it and you'll come to the same conclusion. I don't
have many books on it, but I'd probably start with Handbook of Catholic
Apologetics[1] by Kreeft and Tacelli.

[1]: [http://www.amazon.com/Handbook-Catholic-Apologetics-
Reasoned...](http://www.amazon.com/Handbook-Catholic-Apologetics-Reasoned-
Questions/dp/1586172794)

~~~
strathmeyer
We did research it, but don't worry, your insults don't affect us much
anymore.

~~~
sdegutis
My insults? I didn't insult anyone. Why do you think I did?

------
scorpioxy
Nicely written. Why is it that we only look for what is important to us when
we realize that we don't have long to live? Don't people realize that this is
true starting the day you're born?

~~~
invalidOrTaken
Because there's a lot of "unimportant" stuff necessary to sustain the
important stuff.

~~~
bjelkeman-again
I think there is a lot true in that. It took me a good few years to get to the
point of being able to focus on what is important for me. But, it do not think
that the journey was wasted. Indeed it feels like everything/most what I have
done up until now has put me in the position to do what is important, much
more effectively and with some actual impact.

I learn slowly, so it took a while, but the journey is what was important in
the end not the goal. So now I look at every step along the way and make sure
it is both useful to my surrounding world, fun and gives me experience to do
something bigger, better, funner for the next step. It probably sounds like a
cliche, but it is nevertheless true for me.

~~~
ZenoArrow
Thank you.

------
gytdev
one of the most clear, lucid and scientifically literate stories about
existentialism I have heard in a long time. I bow my head to Paul Kalanithi,
the author:
[http://www.stanford.edu/group/dlab/images/paulk.jpg](http://www.stanford.edu/group/dlab/images/paulk.jpg)

------
MarkMc
This part annoys me:

> Where was the study of nonsmoking 36-year-old neurosurgeons? Maybe my youth
> and health mattered? Or maybe my disease was found so late, had spread so
> far, and I was already so far gone that I was worse off than those 65-year-
> old smokers.

You don't need a 'study', you just need a comprehensive database that includes
patients' age, smoking status, body-mass index, health status, and other
prognostic factors. Then run a query to find what percentage of similar
patients are still alive after 5 years.

Just about every person who is diagnosed with cancer asks, "What are my
chances?". (And the best treatment usually depends on an accurate answer).
Wouldn't the benefit of compiling and maintaing a central database of all US
cancer patients be worth the cost?

------
cliveowen
I get so scared and sad when I read these articles. I always wonder "could it
be prevented?", sure, you know you shouldn't smoke, you shouldn't be
overweight and you should do at least 15 minutes of exercise every day, but
does it really help? I bet a doctor would know better than anyone else how to
live a healthy life, so this obviously begs the question: could cancer really
be prevented?

~~~
has2k1
According to the professionals of the field, there is little hope for ever
preventing cancer. For a protein life that has sufficient complexity, cells
have to divide/replicate to maintain the life of the protein machine, e.g a
human body. Stuff can go wrong with the division/replication, it can be
inaccurate in so many ways but what matters most is that the replicates can
also replicate.

Some cells die before they attempt a single replication. This could be due to
a disease attack, vulnerable imperfect replicate, plus plus. As long as those
that get to replicate can make up the numbers for those that die early. Cells
that are resilient and can replicate fast and frequent enough before they die
tend to pass on forms of this attribute to their imperfect clones.

With time, many types of cells in the whole protein body get to attempt
replications faster and faster. Pure natural selection at work -- a concrete
example, smoking kills lung cells, so for the lung cells to maintain their
numbers they have to replicate early enough in their life time and frequently.

Most environmental pressures seem to force the biology of the cells in this
direction, which increases the likelihood of replication eager cells aka
cancerous cells.

That is why at this moment in time, prevention seems bleak.

------
aaronsnoswell
I don't understand how everyone here was able to read this article - I browse
to that link and get a message telling me it is locked behind a paywall,
requiring my subscription before I can read it. Do all HN readers also
subscribe to the NY Times?

~~~
nicolethenerd
You should get 10 free articles a month before the paywall appears. I'm
guessing most HN readers haven't used up their quota yet.

~~~
mkempe
How to read the article: Search for the article's title in Google (hint:
select the title in the non-working NYT URL, dashes are fine), and the link
from Google's (probably) top result to NYT will let you in, freely.

------
cko
I'm very curious: are there people who fear samsara? I sure do.

[http://en.wikipedia.org/wiki/Saṃsāra](http://en.wikipedia.org/wiki/Saṃsāra)

------
brosco45
Alternative medicine is the only solution.

------
dollar
For Christ's sake, is there no safe haven in this world for the unapologetic
atheist? I thought that Hacker News might be the one safe zone where Jesus
brainwashing is not regurgitated to the masses, but I guess not. News flash
for everyone, death is inevitable, and people do not rise from the grave,
whether they harbor sympathy for humans or not. Life's meaning, if there is
one, is at this stage incomprehensible to human beings. If there is life
beyond the grave, it definitely isn't life, and it definitely isn't what you
think it is. How many more years must humanity be shackled to superstition and
death fear before we fucking get over it and move on to the important work of
getting off of this planet? For fucks sake...

~~~
nova
> News flash for everyone, death is inevitable

As far as we know there is nothing in the laws of physics about death (or
life). It's all about fields and particles. Or maybe strings or loops or
something else, but vitalism
([https://en.wikipedia.org/wiki/Vitalism](https://en.wikipedia.org/wiki/Vitalism))
is over.

So death "is" inevitable only because we don't know how to prevent it.

> How many more years must humanity be shackled to superstition and death fear
> before we fucking get over it and move on to the important work of getting
> off of this planet?

I'm totally okay with space colonization but conquering death (with science, I
mean) seems like a more pressing issue. After all, even if we already had
space colonies people would still die.

~~~
dollar
People would still die indeed. But I think technologically our odds favor
tackling the issue of colonization over death. If we remain here on this
planet, death of the entire species is a certainty. That could happen a lot
sooner than people think.

------
marincounty
I was told that Japanese Doctors don't discuss mortality rates with their
patients. I was told they don't even mention the word Cancer. If a patient has
stomach cancer, the patient is given the best currently available treatment,
and is told they have a bad case of heart burn--and told they will get better!
The reasoning is they want to get every once of magic The Placebo Effect has
to offer. I don't know if it's better to quote stats to a patient, or
lie(hopeing the Placebo Effect will take over?).

Personally, I don't use the Internet for any health related concerns--It has
always just made me feel worse, and is loaded with hysteria, and just horrid
advice.

And yes, I know U.S. Doctors can't lie to their patients. I'm just relaying
what I was told twenty years ago.

When I get sick--I'm not sure if I would want to the statistics of survival. I
would live every day as my last. I would take any drugs the Pallitive care
Physician offered though. My father benefitted greatly from the opiates the
doctors prescribed before he died.

I hope the doctor makes a full recovery, and commend him on his honesty and
openness. Sometimes I forget doctors will someday be patients.

Oh yea, to the Marin General counter person who asked me if I wanted to sign a
Advanced Procedure Directive, before even saying hello--if you happen to read
this--one day you will be on the other side of the counter.

Good night! I hope you all stay well and are happy!

------
powertower
It's really difficult to read these types of stories and comments because it
shows us that happy endings are not guaranteed for anyone by the universe.

We're just all flesh that's about to fail - sometime, eventually.

And that sometime comes sooner for some of us than latter.

