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.
>regardless of age you should get it checked out. (not just if you're 40+)
Ah, yes. Guess I should have expanded on that a bit. If you've got chronic acid reflux, the ongoing symptoms of that aren't much different from the initial symptoms of esophageal cancer...even if you're being treated. So, suggesting that you ask about it specifically if you're 40+.
Anything unusual or new, though, yes, don't wait on that.
>(finish up my chemo/surgery/chemo+radio this friday... whoop!)
No matter how probable it is, without a definitive assessment, it is not responsible to announce such a dark diagnosis without certainty. You can't send people in this nightmarish process (as described in the article) if there's still a small % chance it is not the definitive diagnosis.
And yes, pathological diagnosis is rather long, ie a little week at least so the tissue can be fixated with paraffine, have immunohistochemical markers determine the type, etc. Yet I've visited a place when they could do fast recognition on breast cancers while the patient was on the table, and depending on the result either directly remove lymphatic nodes or not, but I guess this fast coloration is not available for less common tumors.
Even if IAs do the reading, for the moment there will still be delay to have a diagnosis.
>it is not responsible to announce such a dark diagnosis without certainty
I think that's the crux of the discussion here. For many of us, we're going to find out it's a possibility anyway, so what's the point of the doctor not acknowledging it? Actively witholding information just adds to the anxiety. Not asking for an early diagnosis, just a frank discussion about the possibilities.
Disclaimer, these are only hypotheses out of my own experience, and this seems to be extremely dependent on the doctor.
That's not an easy announcement to make, and without certitude you don't feel compelled to make it, so maybe a bit of easy way out ?
Cancer raises many questions (or so I guess), which takes a lot of time to clear out, for something only hypothetical so far (plus some people are really bad at understanding). Certitude will come a few weeks later and by then you will need to go through hour long appointments to discuss everything again. So lack of time.
Maybe it's wrong, I don't know, I just think it's not an easy question and there's no definite answer.
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.
I'm sorry for your diagnosis and hope you are surrounding yourself with good people through your journey.
As a doctor I will say that there is no real evidence of this decline in age of first cancer.
I respectfully suggest that you may have bias through the inevitable path your life has now taken, the people you talk to, see through your treatment etc.
An aside to this is that we are much better at detecting breast ca, prostate ca and cervical ca through screening which leads to earlier detection (and earlier staging, meaning higher survival)
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).
I have a hiatal hernia and specifically was told that ppis were required to avoid this fate. I'm curious how you were led to getting checked out? Symptoms? I'm pretty religious about taking medicine, without which I will have all the typical symptoms -- feeling bloated shortly after eating, acid reflux, etc.
That's why, I suspect, this type of esophageal cancer usually has such a grim prognosis. It mimics symptoms you already have, so you ignore it until it's too late.
In my case, the pain was worse than usual, though I didn't consciously note that. What did happen is that I was eating less because of it, so I had unexplained weight loss. That caused me to see the doctor.
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.
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.
> 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.
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.
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.
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/) 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.
> 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.
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.
My phone also knows that there is an accident on my route home, messages me before I get into the car, and tells me to take an alternative route. I cant remember the last time my GPS didn't navigate directly to my destination.
Another way to phrase the question: Would you rather use a paper map or GPS?
We are doing it today. We of course sell it as assisting the doctor. Partly because of things like FDA and legislation, partly because doctors and reluctant to change. In due time they will value the algorithms decision over their own and the balance will shift. It is like the chess computer. They claimed it could never beat them, they tried, and they lost. Our algorithms run against millions of other cases in milliseconds. A number a human brain cannot possibly contain no matter how experienced. And each new case adds to its power. Not only the cases one doctor sees, but that every doctor in the world sees. It's numbers really.
Healthcare becomes the next industrial revolution. Of course nothing is ready yet. Not only doctors but also law needs to change. When an algorithm makes a false negative, who will we sue?
Note I do not say doctors will no longer be needed. They very much will be. But their work shifts towards the social part of the job. Guide the patient, help him/her understand. Assure. Etc.
"Good luck ever convincing doctors (or the general public, legislators, etc.) to let themselves be replaced by machines."
This presumes doctors are in control, which they are not. I suspect the insurance industry will adopt and impose these technologies as an independent analysis channel in the same way they impose current bureaucratic process.
This is closer to reality than you might think. Doctors get less and less control in this as Healthcare costs continue to rise due to the aging population. Healthcare has to be come more efficient to be able to keep up or nobody would be able to pay for it anymore. So where we sold to doctors Five years back we now sell to hospital MT. Hospital MT controls the money and are constantly searching for ways to perform more cases a day. AI is their only viable option and so they will buy in sooner than later.
Respectfully disagree. The moment people are able to reliably say that the computer is more accurate than a human, people are going to want it IMO. Cancer is just too scary to fuck with, they are going to want the fastest, most accurate thing you can get. And then they will want a second opinion from a human, of course. :) But that's no different than today!
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.
> I wonder how much the health outcome could be improved by treating patients more humanely.
Treating patients more humanely costs money, while health care is just another business, human care is just for the people that can afford it. She is lucky to have you by her side. For you, she is not just a business, she is a beloved human being.
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?
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.
If you're lucky you have someone to drive you to one specialist after another, and all they seem to care about is their fee.
People don't need hand holding, but they don't need to put up with doctors who are deep in professional deniability.
I don't have a solution.
I watched my father go through hell with his cancer diagnosis. They had residents comming into his hospital room Palpating his liver tumor. The last straw was when this very young person came in, and started to lift his gown.
I had a feeling what was going on, but asked anyways, "What are you doing?" White smock, "Oh, I need to palpate the patient!" Me, "You are the third person pushing into his right upper quadrant, for no apparant reason? Are you a resident, and just learning on my father?" The person abruptly left the room.
All the doctors said we can't help you father, but we had to drag him into their fancy offices. And they loved his insurance plan. It was a good one. Paid 90% of whatever they charged, and they charged.
Specialist, "Well after reviewing your chart, I can't help."
Rinse repeat, after another doctor's office call. "I would like to see you!"
Done. I thought Pallitive Care would be efficient.
Then a call from a Doctor. "I can help you." He also gave a speech on drinking. I knew at the time, this little stocky dude was enticed by the good insurance, but what do I know?
Well, after a week, my dad gets the call. "I'm sorry. I can't help you." He did seem sincerely dissapointed.
Weeks later my father slowly wither away in pain. The hospice doctors never quite gave enough medication.
(It got to the point, if I knew a drug dealer, I would have gone out to buy heroin for my father. Great system?")
So you're able to jerkily refuse students to come and learn on patients, but you can't refuse specialists appointments (and these unbearable doctors keep doing their job, trying to do prevention by discouraging people from drinking and smoking !), even when you knew that this case was helpless ?
I understand it is painful to lose a parent and see them in such distress, but I really don't get patients/families who
turn into salt mines when the unevitable happens. Some patients are very willing to sollicitate many specialists in hope for good news, no matter how unlikely they are, and hold praticians responsible for what is often more of a patient/family's own unability to deal with [diagnosis]. Good luck with your grief.
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.
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.
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.
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.
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.
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?
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.
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.
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?
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.