The Kafkaesque Process of Cancer Diagnosis
cancer.nautil.us
cancer.nautil.us
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.
I would say, though, regardless of age you should get it checked out. (not just if you're 40+)
I was diagnosed with stomach cancer aged 33, which is highly abnormal, but... it happened.
(finish up my chemo/surgery/chemo+radio this friday... whoop!)
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!)
Congrats!
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.
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.
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.
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)
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.
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-...
1) https://news.developer.nvidia.com/diagnose-heart-disease-wit...
2) http://bigthink.com/paul-ratner/heres-when-machines-will-tak...
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.
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 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.
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.
"Emotion" is not the reason companies still design airplanes and CPUs by hand.
Another way to phrase the question: Would you rather use a paper map or GPS?
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.
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.
I do agree this will be a slow process.
I'm firmly for AI augmenting and bettering a Drs diagnosis ability.
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.
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.
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?")
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.
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.
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.
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.
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...