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You have cancer. Oh wait, it's just mono.
October 17, 2008 10:42 AM   Subscribe

They sad I probably had cancer. Turned out it was mono. Is this normal?

In January of this year, I had a few strange symptoms--night sweats, extreme fatigue, flu-like symptoms without a runny nose, swollen lymph nodes. I ended up going to my universities health clinic, as I'm a graduate student. Anyways, it was a Friday, and I told the doctor my symptoms. I had a few tests taken (including a "quick" mono test, which apparently is horribly inaccurate), as well as an x-ray of my chest.

Well, the clinic doc took a look at everything and got really worried. The mono test was negative, and she didn't seem to see any problems with my throat. She consulted with another doctor, and sat me down. Basically laid it out to me: you either have lymphoma (bad), or sarcoid (pretty serious). I was to get a CT scan the next day, to make a better diagnosis and see if anything was spreading. I was blown away of course, but I had her call my parents and talk to them about the situation to make sure I or her wasn't crazy.

Anyways, I went in for the CT scan that Saturday, and she wanted to schedule a biopsy at a local ear nose and throat (ENT) clinic the coming Monday. After a traumatic weekend with some of that nasty CT scanning liquid, I went into the ENT. The doctor there sat me down and said plainly, "I don't do biopsy's based on other doctor's orders." He basically thought I was nuts, and a bit confused by the CT scan. He took a look at my throat and after about a minute declared, "Yup, mono, almost 100% sure of it." He also took a look at my CT scan "readings" and they all, of course, came up nearly clear, with just a few blotches where some of my lymph nodes were big. I ended up getting a "real" mono blood test, which, of course, came up positive for being a recent infection, and several months later I'm fine, but a bit poorer.

So my (open ended) questions: Was this normal procedure? Does mono get misdiagnosed for cancer often in people of my age (early 20s)? Should I contact the health center to let them know that one of their doctor's is a bit of a sketchball? Do people trust health clinics like this (I am much much more cynical of them nowadays, for obvious reasons)?

I ask this because yes, I do have health insurance, but I'm a pretty poor graduate student. My family helped me out since after coverage, all of this ended up being around $10000 before insurance, and $2000 out-of-pocket (all I have to say is... CT scans are mighty expensive, ENT checkups are comparatively cheap).

I also ask this because I forwarded my file during the "you have cancer" weekend to my friend's doctor-dad, and he took a look and noticed that the tests suggested that there was a very small chance I had lymphoma whatsoever. Also, the wary nature of the ENT doctor made me wonder that the clinic doc was... wildly misdiagnosing me. I also have no (that me or my father/mother knows of) history of lymphoma or even cancer within my family, which would seemingly improve my odds against having cancer.

Thoughts? Similar experiences? I've taken a few months off from it all, since I was a bit frustrated by the whole experience. But recently I'm thinking of seeking some sort of closure... The clinic doctor did call me the following week after everything to apologize profusely, but also tried to justify her position at the same time (annoying to hear that of course).

Anyways, (very) long post... thanks for reading!
posted by djpyk to Health & Fitness (30 answers total) 3 users marked this as a favorite
 
University and college health center doctors are notoriously unskilled. They are not sought-after jobs.
posted by amro at 10:50 AM on October 17, 2008 [1 favorite]


The fact that she said you either have lymphoma or sarcoid is kind of ridiculous. Even if it is a possibility a doctor should only tell the patient that it is a possibility - among many others - at the time and they just would like to make sure. The University Health doctor is probably a family physician and thus has no expertise in this, their job in such a case is to refer and not deliver a diagnosis. I would let the doctor and clinical director of the clinic know that you think the way this was handled was quite unprofessional. If they wanted to diagnose cancer, they should have gone into oncology.
posted by Brennus at 10:54 AM on October 17, 2008


In my experience, general practitioners like to order tests for the "assistance" of the specialist they are sending you to. This is usually a waste of time, since the specialists invariably want things done their way and order new tests.

(This even happens specialist to specialist. I've paid to get copies of x-rays from an orthopedic surgeon, and then the next orthopedic surgeon looked at it for 10 seconds and then took new ones.)
posted by smackfu at 10:55 AM on October 17, 2008


Does mono get misdiagnosed for cancer often in people of my age (early 20s)?

This is completely hearsay, but at the large midwestern public university I went to, the health clinic was notorious for misdiagnosing people. I specifically heard horror stories about people who were dianosed with cancer when they really had some minor illness.
posted by burnmp3s at 10:56 AM on October 17, 2008


IANAD, so I don't know, but shouldn't they have given you the "real" mono test, or another in a few days, before subjecting you to all that more intense stuff?!? I would definitely go up the chain with a formal complaint and try to get some recompense for this.

I've had very good and rather poor experiences with University clinics. My doc in Santa Cruz was wonderful, the best GP I've ever seen, but I sort of figure anybody would like to work there, so that might defy the standard.
posted by Ambrosia Voyeur at 10:58 AM on October 17, 2008


[comments removed - question is not "how can you rant against the medical industry?" thanks]
posted by jessamyn at 11:10 AM on October 17, 2008


Tangentially related, but an urgent care doctor once told me that my daughter had cystic fibrosis (and then immediately walked out of the room and left me alone for an hour, trying desperately not to lose my shit in front of my daughter) and the pediatrician I followed up with told me it was an absolutely ridiculous diagnosis. So, yeah, sometimes doctors wildly overdiagnose. And yes, in my personal experience, it happens more at clinics.
posted by Ruki at 11:12 AM on October 17, 2008


I previously had very good experiences with student health clinics. This year, though, I developed a form of auto-immune disease. The student health doctors were only familiar with rheumatoid arthritis, no other kind, and since my symptoms and test results didn't fit that they told me I was either depressed or had fibromyalgia (after they told me they didn't think fibromyalgia was real).

So, my situation was sort of the opposite of yours, because I was developing a serious, permanent, degenerative disease and they were telling me to get therapy and not to worry about it as I was getting sicker and sicker week by week before their eyes. Luckily, about the time I could no longer climb stairs, I finally persuaded them to refer me to a rheumatologist, who never once asked a single question about mental health because my physical symptoms so clearly matched a condition the student health doctors never even mentioned.

The answer seems to be that student health doctors want to help, but don't have a lot of experience outside of sinus infections and STD tests, so sometimes they screw up. I'll keep going back to them for my annual check-up (it's free) but not for serious health problems.
posted by hydropsyche at 11:20 AM on October 17, 2008


I would sue that doctor for malpractice. Because you seem like you do need closure.

Please don't do that. Malpractice is not meant a way to get closure! It's a way to somehow recoup loss you've suffered when a doctor's actions or failure to act caused injury. Now, perhaps the cancer diagnosis was negligent and the OP lost several months of wages due to stress over her health. Fine, maybe sue then, but don't do it because you "need closure."

Different doctors have different levels of competence, just like any other profession (do I need to rant about bad programmers?), and university health clinics have the worst reputation. It's just that doctors' mistakes tend to be pretty damn costly, as you've unfortunately found out. It's sad, but you really have to treat doctors like you do car mechanics, plumbers, computer repairmen, etc. That is, if someone gives you really bad, expensive news then the first thing to do is get a second opinion. A little more than your friend's doctor-dad. There's only so much guessing a person can do with a couple medical charts over the phone. They aren't seeing the whole picture.

Not that I'm saying this is your fault! It's not. But personally I'd write the whole thing off as lesson-learned and continue on with my life. It's not like I have terminal cancer or anything.

Actually, where I went to school the saying was if you're female then you're pregnant, male then it's mono! I'd much rather have a doctor tell me it's cancer and find out it's mono rather than the other way around.
posted by sbutler at 11:21 AM on October 17, 2008 [1 favorite]


I think a letter to the student health clinic would be helpful. Either that or some kind of letter in whatever student newspaper happens to float around your campus.

The student health clinic at my undergrad was completely full of fail. A male friend of mine went in because his knee hurt since he fell down some stairs and he wanted to know if he should go to the hospital for xrays. They told him he had sphyillis.
I went in after an accident involving a box and my shins. They told me they were just bruised and to leave it alone. I have damage to the underlying area, still. (Aside from the fact that it looks like someone scooped out part of my shin on the outside.)

posted by sperose at 11:25 AM on October 17, 2008


I think anytime you have a care provider of any stripe, in any location, who loses sight of the *person* in front of them there is this potential, not for simply misdiagnoses, but presenting that misdiagnoses in a traumatic or otherwise harmful way. I'm always impressed when I meet a really good doctor, not because of their diagnostic skills, but because they hear what a patient is saying and can incorporate that information into their analytical framework.
posted by mrmojoflying at 11:30 AM on October 17, 2008


My experience with university health centers has been similar to yours. In my case I went to the center complaining of stomach pains, I was written off as having gas, waited 3 hours in a room for a doc to see me, and then the pain got to be so bad I couldn't stay conscious for more than 5 minutes. My stomach ache was appendicitis, which in turn ruptured in hour 3 of waiting for a doctor. I spent 3 weeks in the hospital and another 4 months recovering, if my girlfriend at the time hadn't pulled me out of there and driven me to the large regional hospital I wouldn't be here.

While some university clinics may provide excellent basic services and contain excellent physicians, if you're feeling *sick* do not go to them, go to the hospital, if you do go to the university clinic make sure you have an advocate there for you and set a "walk/run away from this and go to a big regional hospital" plan. All in all your experience in the quality of care wasn't that far off from the majority of experiences I have had or heard about.
posted by iamabot at 11:52 AM on October 17, 2008


A similar thing happened to my wife when she was in high school (and not my wife). She'd been incredibly sick and had a battery of tests done in the hospital. The tests were apparently mixed, and she had two doctors arguing in front of her whether or not she had cancer. Like you, it was discovered she didn't have cancer, but only a very bad case of mono.
posted by borkencode at 12:00 PM on October 17, 2008


Do people trust health clinics like this?

Most of the students seem to dislike the health clinic at the large public University I'm affiliated with. However, I don't know whether this is warranted. The primary complaint I hear is that "I was really sick" (with a viral upper-respiratory infection; in other words, a cold) "and those incompetent doctors at the health service didn't do anything about it !!!" But of course there's nothing any doctor can do about a typical cold/sorethroat/etc illness other than recommend that you rest and take some OTC medicines if you think they will help.

I've been at this University for quite a few years now in various capacities and I do use their health clinic as my primary care provider even though my current medical insurance is accepted by most doctors' offices in the region. There is one doctor at the clinic who I do not especially like. He seems competent enough but I get the impression that he doesn't listen very carefully and he seems to be in a hurry to get you in and out of his office. But, he always has time to squeeze walk-in patients into his schedule, so if all I need is a prescription refill, a strep test, or some other straightforward procedure, I don't see any harm in being treated by him. There is one doctor at the clinic who I like rather well, and I've selected her as my primary care physician. I make a point of getting an appointment with her whenever I have any health concerns that are at all complicated or out of the ordinary, and I would definitely go out of my way to see her if I ever suspected I had any kind of serious illness. As for the rest of the doctors there, they seem to provide competent and adequate care in accordance with customary standards as far as I can tell.

On the other hand, I haven't been affected by (nor misdiagnosed as having) any serious illnesses in the time I've been going there, so perhaps I don't have enough information to really say one way or the other.
posted by Juffo-Wup at 12:14 PM on October 17, 2008


My school clinic was notoriously bad, no matter what you went in for they immediately assumed it was an STD no matter how ridiculous that diagnosis was. I used to get sore throats a lot (this was in a mildewy, ancient Southern town) and I got really tired of having to explain that I did not have AIDS/herpes/whatever every. single. time. They would always want to run hundreds of dollars worth of blood tests when all I ever needed was an antibiotic.
posted by bradbane at 12:19 PM on October 17, 2008


My university clinic delivered STD test results OVER THE PHONE. Fortunately, I was negative, but what if I was positive, do they say, "uhh, you need to come in and see us right away..." WTF? That has to be a huge liability issue for them.

From what I see here it is probably par for the course.
posted by limited slip at 12:36 PM on October 17, 2008


Thanks for the numerous insightful and straightforward replies. No, I won't be suing for malpractice of course, and I appreciate the thoughts from sbutler above, which are pretty levelheaded and I'll be moving forward with.

Part of my motivation for writing this question was to hear discussion on health clinics (perhaps AskMeFi was the wrong place to post this in retrospect... regardless, the end result was similar), as to my mixed experience with them.

After this whole experience, I look at smaller health clinics in a different light--definitely more as a general check-up facility or for a simple prescription/flu shot--that's one thing they are helpful for, is a cheap check-up. Seeing the comments above, that's probably not a bad thing, but an honest skepticism to keep in mind in case of a more complex medical issue in the future.
posted by djpyk at 12:58 PM on October 17, 2008


I went to my university health clinic when I was sick. I was diagnosed with the flu. A few days later I thought I was DYING and went to a real walk in clinic. The doctor took one look at me and said it was probably mono. He took some blood, and sure enough, mono it was.

I found my university health clinic to be good for things like getting a flu shot every fall, but that was about it.
posted by All.star at 1:48 PM on October 17, 2008


I frequently remind people that reasoning skills are normally distributed in the population, and even in the sub-population of physicians.

You are just as likely to randomly select a really poor reasoner as a really good one. Mostly, they'll be average.

That's just the reasoning part. The collection and interpretation of data (in the form of observations and tests) can suffer from its own shortcomings.

Really good physicians (IMO) can see where single data points can mislead and will clarify ambiguities with either repeat tests, or where available, alternate supporting tests before concluding. It helps a lot as a consumer to have above average reasoning skills when evaluating the input from a physician. They even have a saying..."Common diseases occur commonly", which in rough translation, suggests that it is unlikely you have Ebola when you have a nose bleed. Usually, the explanation is not exotic.

(You might want to know that sometimes it works exactly opposite of your problem... docs thought my late first wife had mono and was really cancer. She used to joke that her favorite humorous ephitaph was "I told you I was sick!")

Also, incidentally... for anyone diagnosed with cancer... moving quick is a good idea, but there really isn't any 'emergency oncology'. With few exceptions, there's time for additional tests before panic.)
posted by FauxScot at 2:13 PM on October 17, 2008


A lawyer might be able to tell you if this is a bad idea for possible complications with your current situation (i.e. if you write now, can you sue later if you really need to, as in it's not just mono and it's something worse?).

But I would actually take the time to write to the head of the clinic. I've written to my student clinic for numerous things over the years, including:
- terrible approaches to STIs and sexual behavior
- heterosexist language, forms, behavior (As an old gay grad student, I will clearly correct and point out their assumptions about sexual activity. A shy (or closeted) undergrad might not, and not get the best health access as a result.)
- chalking up multiple physical and emotional symptoms to "stress" when I was severely, dangerously hyperthyroid
- not following up with next steps for blood tests, etc.

In each case I've been pleasantly surprised with the clinic's response. But it doesn't prevent some other issue happening, either to myself or to friends. They're generally nice folks and once in a while you really get someone who is super interested in youth or dealing with a busy clinic situation. Those peeps are awesome and it's worth it to figure out who that person is, and schedule your appointments with them. And of course - second opinions.
posted by barnone at 2:20 PM on October 17, 2008


Anecdote:

I *also* had a few strange symptoms--night sweats, extreme fatigue, terrible unproductive cough without a runny nose, swollen lymph nodes. A doctor (GP at a clinic) diagnosed it as flu.

Two months later, I was no better. I went to another doctor.

Another week later, I was starting seven months of treatment for Hodgkins' Lymphoma. My first x-ray looked so strange, I suppose, that the first doctor attributed it to a wrong exposure, instead of *huge* tumors.

Conclusion:

Sure, it's best to be sure, but it's was probably better to over-shoot cancer and be wrong than dismiss you as only infected and be wrong.

An experienced doctor (like mine) would say "your x-ray looks strange, and I want more info. Get a CT tomorrow morning so I know what to tell you tomorrow afternoon."
posted by cmiller at 2:36 PM on October 17, 2008 [1 favorite]


$0.02 here.

My ex-significant other presented with the same symptoms. She went through seven doctors before she was finally diagnosed with lymphoma. She essentially self-diagnosed through WebMD, but of course everyone she talked to thought she was crazy. I think your doctor's diagnosis was a little premature, but coming from the opposite side of the coin, knowing earlier would have helped.
posted by arimathea at 3:00 PM on October 17, 2008 [1 favorite]


A friend of mine was told by the health clinic at our university that she very likely had an ectopic pregnancy.

It was gas.
posted by sugarfish at 3:51 PM on October 17, 2008 [2 favorites]


Your doctor at the student clinic may have panicked and certainly did a crap job of communicating his concerns over the possible diagnoses he was considering, but I'll tell you that yes, there are certain aspects of your case that might potentially lead one to be at least concerned about lymphoma and sarcoidosis as opposed to mono. I'm guessing that you had what appeared to be very prominent lymph nodes visible on your chest x-ray and that was the cause for his concern. But that's all it is -- cause for concern, not a diagnosis by any means, so if he did indeed tell you that you have one of these two diseases without the benefit of more tests and a specialist's consult, he jumped the gun big time. By the same token as arimathea notes, there are plenty of other doctors that somehow find a way to blow off potentially concerning findings in their patients, and the consequences to that can be far more bleak.

In any event, I'm dreadfully sorry you were put through all this, and hope you bounce back soon from the mono. Best wishes...
posted by drpynchon at 5:21 PM on October 17, 2008


Oh jeez. I had almost this exact same thing happen, though on a much smaller scale. My last year of college, I went to my university health clinic because I had a lump in my neck - turned out to be a swollen lymph node, but not in any way that I'd felt them swell before during colds and the like. The woman I saw checked all of my lymph nodes, found no other swellings, clearly thought that was odd - and then said, "well, I'll send you downstairs for a chest xray." Ok, fine, I didn't think anything of it and would have been totally stress-free about it, had she not immediately said, "to check for non-hodgkin's lymphoma." Cue panic, sweating, mentally preparing myself, as I went through the x-ray and waiting for the results, for the moment she said, "oh yes... this is very bad."

Instead, she said, "you have mono."

So, yes, I'm glad she checked and ruled out a potentially life-threatening and difficult-to-diagnose disease. I'm also grateful that I got away with just an x-ray when it could have been a battery of expensive tests like you had to endure. But could she have had an ounce of bedside manner? It might have been nice.

Glad you're ok. Sorry about the expense and the stress.
posted by AthenaPolias at 8:50 PM on October 17, 2008


University and college health center doctors are notoriously unskilled.

Another data point: my ex-boyfriend got was told he had Hepatitis A by our university health center, and they were on the verge of vaccinated me and his roommate -- right before they figured out it was actually mono. And this revelation was partially due to phone calls from his dad, a doctor specializing in infectious disease.

I still went to the health center after that for things like pink eye, but if I thought I had anything urgent I would have just gone to the hospital.
posted by puffin at 9:38 PM on October 17, 2008


I'm sure everyone has a story about the university health center doing them wrong. My husband almost died of meningitis in college because they kept telling him he just had the flu; his dad (a hematologist) finally diagnosed him correctly over the phone and he was able to be treated.

Moral of the story: have a dad who's a doctor (as puffin also wisely notes).

That said, I had great luck with the university clinic. But I fortunately never got very sick.
posted by padraigin at 10:29 PM on October 17, 2008


Strangely enough, my current university clinic, despite being connected to one of the better teaching hospitals in the country, is ... not that great, whereas the one at my small liberal arts college was great for how small it was, at least in my experience. When I had a relapse in my junior year of what I now know is chronic fatigue syndrome, one of the doctors there whom I had seen a couple of times told me that he was going to refer me to a colleague at a local hospital who had a side specialty in CSF. So that was how I got diagnosed. This was after months of puzzling test results and a wild goose chase after a thyroid disorder that suddenly disappeared, so I was pretty relieved.

(This doesn't cancel out all the bad clinic stories above; I just thought I'd add a good one to the mix.)

In all honesty, while your first doctor was not brilliant, I think her biggest sin was her lack of bedside manner.
posted by bettafish at 11:24 PM on October 17, 2008


It sounds like a pretty bad experience. I recommend you write it up and send it to whoever is in charge of the clinic, as well as the Dean of Student Life. Students deserve good care.
posted by theora55 at 11:41 AM on October 18, 2008


I also have no (that me or my father/mother knows of) history of lymphoma or even cancer within my family, which would seemingly improve my odds against having cancer.

You don't need to have a history of lymphoma or cancer in your family to get it, and actually, as an early twentysomething, you're smack dab in the middle of the first age "peak" for Hodgkin's lymphoma.

And overall, it's better to be overly cautious on cancer; the early vs. late diagnosis can make all too much of a difference. So while I understand your frustration, it's better, I'd say, to have had the tests done and to know, definitively, that you don't have cancer.
posted by limeonaire at 5:30 PM on October 19, 2008


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