"You're Too Young to Have Cancer"- Doctor's Attitudes Towards Patients Must Change
The "Doctors-are-Gods" Complex
Though no one ever comes right out and says doctors are gods, and though everyone knows in reality doctors are not gods, doctors have long been revered as the next best thing. Being the experts that they are on the human body, its systems, functions, and general behaviors, we literally put our lives in their hands when we go to them for help.
Who else can we turn to when we feel sick, or feel that something might be terribly wrong with our bodies? If for some reason the doctors can't find what's wrong with us through an examination, we know they have all kinds of tools at their disposal that may tell them what they can't see; at least we hope this is the case.
Unfortunately, all the high-quality testing equipment and scanning devices are worthless if the doctors don't utilize them correctly, if at all. Errors occur more commonly than we think. Doctors are human, and humans are never infallible no matter who they are, or how much education they have—despite what is commonly believed.
Over the course of the two years I was symptomatic for colorectal cancer, I had three CT scans of my abdomen and pelvic area. Yet the doctors missed a tumor in my colon that they could feel well enough through a rectal exam. I complained of rectal bleeding (the last time to the point of needing a blood transfusion), difficulty and pain going number 2, and unexplained, chronic infections that indicated lowered immune function. So how was this diagnosis completely missed by half a dozen ER doctors, radiologists, and a host of clinical doctors? The "how" isn't nearly as simple, or as disturbing, as the "why."
Most Commonly Misdiagnosed Ailments
Death by Medical Error
The chart above indicates that cancer is the most misdiagnosed illness drastically higher than all others. According to Health News by NPR, death by medical error is the third leading cause of death in the U.S. (heart disease is number one, and cancer is a close second). Death by misdiagnosis isn't included these error statistics. If it were, and it should be, death by medical error would most likely surpass heart disease as the number one killer by an alarmingly high percentage, even if the mortality rate for the misdiagnosed cancer patients was known.
Complacency, Incompentence, and Arrogance...
In conjunction with, or maybe completely apart from the god-complex, is what I refer to as CIA (Complacency, Incompetence, and Arrogance). I don't think it's uncommon for this to happen to people who are placed high atop a pedestal, even if the pedestal is deserved. And doctors do deserve it. It's when that position is abused that we run into the problems discussed herein.
It's assumed that doctors MUST know everything about the human body. Twelve extra years of hard schooling that most people couldn't even imagine doing makes doctors appear to be the end-all of human intelligence. If someone didn't know everything there is to know about the human body after that much time in school, something must be wrong with them, right? That's a lot of responsibility for any human being to live up to, but I truly believe this is a position many of them put themselves into, if not exacerbated by the CIA doctors who came before them. When I asked my oncologist if I should be concerned that waste material was still exiting my body even though my intestines were being diverted through a stoma (poop bag). He told me that was something that shouldn't happen. His answer nearly sent me into a panic, but he didn't offer me any solutions. I kept my cool and did as I usually did when I had concerns, and that was go to the cancer board I was active with online. I got the correct answer from a survivor: Yes, it was very normal for some ostomates (people with poop bags) to experience light pooping through the rectum. Not a big deal at all.
It took me a long time to understand why my doctor lied to me instead of simply admitting he didn't know the answer, or at the very least, refer me to an ostomy nurse who most likely would've known. I believe the reason for the lie was pride driven with the fear of appearing incompetent. It was a bit of information he probably should've known, being a GI oncologist, but not even doctors can know every, single detail about their expertise, and they know even less about us as individuals. The latter is an important factor very few doctors take into consideration when dealing with patients. I can't even count how many times and how many different doctors stuck their finger up my butt and told me it was internal hemorrhoids causing the rectal bleeding; they'd seen it a hundred times before. Well the hemorrhoid they were so sure they were feeling in me just happened to be a big, ole, cancerous tumor! This is where arrogance and ego easily turns a skilled doctor into an incompetent one. Assumption is a dangerous game that can be detrimental to a patient's over-all prognosis.
It doesn't matter if the doctor's felt internal hemorrhoids on a thousand patients, there's going to be a percentage of those that were something other than what they assumed, but got missed because the doctors didn't take the next steps to rule it out. I couldn't be certain at the time, but I know now that doctors don't come with a hemorrhoid/tumor detection device on the ends of their fingers.
ER doctors aren't necessarily designed to diagnose disease, but they're definitely not supposed to patient dump. They're supposed to properly screen for an emergency situation, and admit the patient into the hospital if need be so a specialist can assess the situation, and either treat, or release. Unfortunately for me, none of the ER doctors I saw over a two year period were competent enough to get me that far, even though I was in desperate need of it.
The complacency factor has been the most frustrating aspect of my entire cancer performance, but the beginning of it was just unbearable.
My final attempt at diagnosis with the ER was the worst ever. It found me at the end of trying to seek help, and literally wishing I would just keel over and die. I was bleeding profusely through the rectum and miserable from the cramping of a bowel obstruction. I begged the doctor to find out what was wrong with me, but like the others before her, she didn't see my need as urgent because the CT scan came back clear. She did admit that I was anemic to the point of needing a blood transfusion, so she recommended I get some iron pills, and schedule an appointment with a GI doctor (the reason I hadn't seen a GI doctor months or even years earlier was because I was uninsured and couldn't afford it. If they had treated me in the ER, I would've been able to make payments on the bill. The colonoscopy would've cost an upwards of $500, with payment due immediately, and the pathology would've cost over $1000). Knowing I was uninsured, she heavily drugged me and sent me out the door with my boyfriend practically having to drag me out. I discovered later through obtaining my medical records that her notes completely downplayed my condition: "Patient complains of some rectal bleeding and cramping. CT unremarkable." It wouldn't be until my diagnosis a few months later that I found out why the CT scans kept coming up clear.
The a-ha moment came during the CT scan they performed immediately after the tumor was found. It was taking an unusual amount of time to finish, and eventually the tech came in and told me I needed to give myself an enema because the contrast wasn't getting past the sigmoid colon. Three CT scans over the course of two years, and not a single doctor or technician ever came back to say they needed to redo the scan because they weren't able to see past the sigmoid colon. They just blew it off and wrote in the report that all was good. No wonder I was never billed for a single one of those past ER visits.
I had trusted this entire time that I'd been in the hands of competent professionals and was being treated fairly, when the exact opposite had been happening. It was a lost trust I would never again regain, but that ended up being a blessing for me in the long run. It's when I started questioning everything the doctors said or did, and saw that CIA, or some derivative of it, was running rampant in the healthcare establishment.
I was unable to get the enema past the tumor myself, so a doctor had to be brought in to do it while I was on the CT table. After that, the contrast passed the entire way through the rectum and my tormenter, who'd made my life a living hell for two years, finally got its big-screen debut.
There's no question why my story isn't even close to being unique. I've met dozens of others in my similar situation that experienced difficulty getting diagnosed or treated because of the same, or similar reasons; primarily the CIA. The most common thing I heard from doctors after I figured out on my own that it was cancer was, "oh, you're too young," or "that's very unlikely given your age." I was 35-38. How could I be too young for cancer regardless of what species it was? I know someone who's two year-old nephew died of colorectal cancer. Who's too young for cancer? Quick, call Guinness! Or at the very least gather the tumor board together! We have a true-blue miracle here!
Every Solution Starts With a Problem
The GI doctor who diagnosed me was the last doctor to tell me I was too young for my issues to be cancer. He was the sweetest doctor I'd met thus far so I didn't begrudge him his folly. Regardless of what he believed, he listened to everything I had to say, and squeezed me in between patients so I could get the colonoscopy within two days. Immediately after the scope, he was genuinely heartbroken to give me the news and he even called me at home a couple of days later to check on me. I would've loved to have kept him as my GI doc forever, but after many failed attempts at rescheduling future colonoscopies with him, they finally admitted to me that he had passed away a year or so after my diagnosis. I'm pretty sure he was around the same age as me, which made it even more heartbreaking.
I also love the primary doctor I have now. She's old school and always trying to push drugs on me for every thing (I hope she never sees this article!), and though she's always really late for our appointments, I know it's because she spends a lot of time listening to her patients. In fact, I love most of the doctors on my team right now. It took a lot of years to establish that. It still needs a little work here and there, but I've learned how to deal with my cancer when it pops up in ways that don't require a doctor. That's taken a lot of stress out of worrying about what new 'mistakes' they can come up with to throw my life into disarray.
Not every doctor suffers from CIA, but sadly, they look to be in the majority. I've seen literally dozens of doctors in so many different fields over the past twelve years since symptoms began, and so many would just talk my ear off about how the body works under such-and-such conditions, and warn me that if I don't do such-and-such in such-and-such a way, this-and-that is going to happen. They rarely, if ever, give any consideration that I'm an individual and that my body may not be like the patient's they saw five minutes ago. When I try to explain to them how MY body works, they either argue with me, or talk over me without letting me get a word in edgewise. I had a doctor tell me once that she had many more years of education than I did so I shouldn't question her expertise (she had no idea how much education I had, but she knew I wasn't a doctor since I was in the clinic). The subject we were talking about was gallstones. I didn't want my gallbladder removed and I knew people who had dissolved their stones. She argued with me that it wasn't possible and insisted that the only way to remove the stones was through removal of the gallbladder. She was wrong, but she'd sufficiently made me feel small enough to not try and question a doctor again for many years after that.
I decided that trying to discuss anything with a CIA doctor would always be a futile act on my part. I wasn't as medically educated as they were so they'd always view me as someone who wasn't intelligent enough to hold par with them in a conversation. I think many people feel this intimidation around doctors, and I still do when I come across one that's aggressively CIA. All I can do is sit there until they're finished telling me how my body works, then leave and never return. What can you do against such arrogance? I'll tell you right now that the amount of education a person has doesn't determine their intelligence and sometimes an over-abundance of education can actually dumb a person down. Though I believe doctors have to have a certain amount of high intelligence to get where they are; especially in certain subjects (ever take an organic chem course?), I've certainly met doctors who's lack of intelligence in other matters completely shocked me. But this gets away from the point. The point is, we all have the capability of thinking for ourselves and each of us knows our body better than anyone else possibly could no matter how many M.D.'s or PH.D's they have. We don't have to sit by and allow a doctor to talk down to us or tell us they know what's best for us when they won't even listen to us long enough to get an idea of who we are. None of us are carbon copies of the other, even if the majority of people with a particular illness trends otherwise. Doctors have been wrong in diagnosing me nine out of ten times. In the beginning they were 10 for 10. I fought arrogant doctors for years to be able to see certain specialists when I knew the pain I was experiencing meant something was seriously wrong. They couldn't diagnose it because they didn't know how to. That's what the specialists are for. It took two years after radiation treatments to find out the pain I was experiencing was from chronic tailbone fractures due to bone insufficiencies the radiation treatments had caused. The doctors simply wouldn't listen to me when I told them it felt like the bones were cracking in my pelvis. They played me like I didn't have a clue about my own body or what a broken bone felt like. This mentality towards patients has to end. It's inexcusable to get a diagnosis two years after symptoms start when a simple blood test, or correctly read scan can tell them what the problem is. Instead, me, and many others like me, are diagnosed at an advanced stage of a disease that could've been caught before it barely got started. All it would've taken was just one of those to listen and put just a tiny bit more effort into investigating it.
A woman I became friends with on the cancer board had such a similar experience as I, they could've been the same story. She went two years with symptoms but couldn't get diagnosed because the doctors thought she was too young to have colorectal cancer. By the time they found it, it was very advanced. She survived five or six years, hardly getting a break between recurrences before she tragically succumbed. Her premature death was a direct result of doctor CIA, and there are many, many stories just like hers with the same result; an early death. How can this happen in a society that has the easiest and best diagnostic tools ever known to man, especially when the patient is exhibiting serious symptoms? There's no need to ponder. It's doctor 'error'-gance.
The wisest doctor I ever met was an Asian GP who unfortunately wasn't my doctor, but I paid very close attention to what he was doing as he assessed the person I was with. I was so impressed with how he handled everything, I started griping to him about all the CIA doctors I was surrounded by. He simply said to me "the patient is their own best doctor. No one knows their body better than they do." They're words both the patient and doctor need to live by in order to work together efficiently. Otherwise, the doctor will fail us most of the time. Doctors should be our guides and advisors as we traverse the path to wellness, not our judgers, assumers, and intimidators who see us as little more than a medical records number with a one-pill-fits-all illness.
Doctors take a Hippocratic oath to first do no harm. I would hope that all doctors, when taking this oath, genuinely mean to uphold it. Do the ones who are complacent to our suffering and patient dump us so they don't have to deal with our whiney problems, realize the potential harm they're doing? Do they have any rational comprehension that the choices they make about how they treat us (both personally and physically) has a positive or negative affect on our lives and on the lives of those who know and love us? Maybe the better question to ask is do they care?
Being able to make life or death decisions doesn't make a doctor a god, but it is a HUGE responsibility they've taken upon themselves to fulfill competently. If they can't take every one of their cases seriously, or if they're just too full of ego to be of any use to us, they have no business practicing medicine.
It's ultimately up to them what kind of impact they want to make on the world with the power they possess and what kind of legacy they want to leave behind. The doctors who'll be remembered aren't the ones who had the most patients or made the most money. The ones who'll be remembered are the ones who made an important difference in their patient's lives. The ones who took those few extra steps to discover what the problem was, and listened when their patients told them their 'normal' wasn't normal anymore.
The doctors who may be reading this right now and angry about it may be the ones who need to take a good, hard look at how they view and treat their patients. Each and every one of their patients. Not just the ones with great insurance who may be wealthy and intelligent enough for your standards, but the ones who are cash paying, or on government assisted medical benefits, and even the ones who have nothing at all to give. Do you see them as less intelligent, or less deserving? Do you believe you know how their bodies function better than they do because you're a trained expert in anatomy and physiology? Do you take the necessary steps to rule everything out before assuming something common is the problem? Do you make assumptions and judgements about your patients when a certain disease or illness is discovered?
All the work I've put into patient advocacy has mostly been focused on encouraging patients to be more proactive in their care and not be afraid to question every last thing their doctors tell them. This is of little use if the doctors don't also encourage this; and they should. The ego has no place in the exam room, and neither does judgement or complacency. Until the CIA doctors change their practices, the patient has little recourse but to exhaustedly change doctors again and again. Some patients don't even have that option, as I didn't with a nasty GI doc I got stuck with who put the Marquis de Sade to shame.
I didn't write this article to anger anyone or to ruffle anyone's feathers; not too much, anyway. My intent is to spark an open discussion on a very real problem that's plaguing the healthcare system. I don't go on tangents when I disagree with my own doctors, but I'm not afraid to question what they say, even if it just means taking the info home and researching it on my own. I'm no longer afraid to turn down my doctor's treatment advice when I don't agree with them, either. That decision is a big reason why I'm still alive today. I also know how to publish an article, and for me, that's a much more powerful and effective way to try an enact change where change is needed.
We know doctors are not gods. They're human beings with a high degree of medical training. They can't take one look at you and know you have cancer or much of anything else without confirming it through tests and/or scans. Any other conclusion is suspect no matter how many times a doctor has seen it. Doctors don't know everything. Not even everything about the human body, and not even about everything in their chosen specialty. It's a vast science that has a billion components, variables and nuances, many of which are still a complete mystery.
We simply can't hold doctors in such a high regard that we forget they're just people with a high skill set in a particular field. They, in turn, should use the opportunities given to them by their patients to learn as much as they can about their chosen specialty. The people who live it know it best, as the support groups repeatedly show. The lack of free communication is counter-productive, and it's costing people their lives. We just can't allow that to continue.
If CIA doctors won't change their attitudes towards us, it's up to us to call them out on it. Bring it to their attention when they're wrong, and stand up for ourselves when they're being ineffective. We just have to keep in mind that it isn't our jobs to please our doctors, or to be an easy patient. We don't have to be jerks about it, but standing up for ourselves is anything but that.
It's ironic that in my cancer's final scene of Act I, it was a physician's assistant in a rural clinic, half an hour away from the nearest hospital, who stepped up to the plate and saved my life. Where all the higher educated and higher paid members of the healthcare community had failed, it was she who showed me the steps I needed to take to get the colonoscopy and the long-awaited diagnosis that had eluded so many others. All she had to do to become my personal hero was care enough to perform her job correctly. That's both a wonderful and disheartening thing.
Thank you, Jackie McGrath, wherever you are. I will always remember your kindness, and your name.
Have a story to share? Leave a comment below! Let the doctors who may read this know what it's really like on the cold, hard-metal end of the stethoscope.
Have you experienced a misdiagnosis that's threatened your life?
© 2017 Krista D'Ambroso