Author Topic: Is my primary just engaging in a little CYA? Or should I see a specialist?  (Read 6245 times)

Melisande

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Our medical spending has been through the roof this past month, primarily because I got hearing aids for the first time. (Wow, were they expensive!) Today I had to go in for my quarterly blood test with my primary. He asked if I had any other problems of course, because that is what primaries do when they are doing their job. I was hesitating about whether or not I should show him the boil on my back that I have been self-treating (with Ichthammol ointment, heat and garlic) for the last few weeks. But I went for it.

Me: "Everything's fine. Except that I've had an annoying boil on my back for a while. It's definitely getting better -- it's getting smaller and not nearly as painful as it was 3 weeks ago, but it's still there. Why is it taking so long to go away?

So, the doctor takes one look at it and says I need to see a dermatologist to have it biopsied. The problem is that he sees an irregular dark spot in the middle of the boil and he thinks it might be cancer. I told him that I thought it was some blood from the boil that was pooling in the center of it. He said, sure, it could be blood but it could be cancer too.

However, I know for a fact that: 1) I did not have this dark section (which measures about 2mm x 5mm) even two weeks ago and 2) that it changes shape all the time. Last night it looked more oblong and this morning it looks triangular for instance.

OK, I'm not an expert in dermatology, but it is my understanding that skin cancer doesn't come on that quickly and change shape that rapidly. And I am also 99% sure that my problem is a boil. (For one thing, cancer doesn't go from nothing to incredibly painful in a couple of days, then feel better.) I suppose there is a remote possibility that I somehow happen to have both a skin cancer and a boil in exactly the same spot, but really, what is the chance of that?

My doctor was thinking out loud and apparently applying the ABCDE diagnotic heuristic, of which my dark spot apparently shows 4 -- Assymetrical, Border uneven, Diameter larger than 1/4", and Evolving. But wouldn't blood pooling at the center of a boil show exactly the same signs?

So, what do you think? Is my doctor just covering his ass? Should I trust my rational side, save my time and the 40$ co-pay? I already know I have to see another specialist (a rheumatologist) in about two weeks and am not keen on adding yet another doctor's appointment (and, of course, the 40$ copay).

Or should I listen to my fears/worries and go ahead and make that dermatologist appointment anyway?

Sorry, by the way, if I grossed anyone out.


begood

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Go see a dermatologist. If it's a boil, you might have wasted a co-pay. If it's cancer, you might have saved your own life.

frugalorganic

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Make the appointment with the dermatologist.  If it clears up prior to the appointment, cancel. 

Melisande

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Make the appointment with the dermatologist.  If it clears up prior to the appointment, cancel. 

This is the smart approach. But I went ahead and took the earliest apt. (Wednesday morning), so I'll probably wind up going. I figured even if it wasn't cancer, I have had this thing for three weeks and just want to get rid of it. So it probably won't be a complete waste of a visit. I just hope the dermatologist doesn't even see the need to do a biopsy (i.e. a clear-cut boil to be dealt with with lancing/antibiotics). I've had two biopsies in the past and I cannot seem to stop myself from worrying and generally not enjoying myself until I get the results.

dcheesi

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Wow! Where do you live that you can get an appointment with a dermatologist that soon? Most places I've lived, you could go months waiting for your appointment!

Apparently there's a perpetual shortage of certified dermatologists, somewhat-deliberately maintained by strictly limiting the number of training slots for that specialty.

catccc

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I would go to the dermatologist.  Basically, I think this is not a time to "cheap-out."  And  it's not like I'm not all about maximum medical intervention... I had midwife attended birth center deliveries for my kids.

If you worry in the time it takes to get results from biopsies, how is it that you aren't worried at all about not getting a specialist opinion?  I guess maybe because the biopsy means they need to check if something is wrong.  And not going means you are confident it isn't any issue.  Okay, I can understand that.  Hmm, funny that I'm making all these assumptions about you and your thought process...  Anyway, I hope it is nothing and you find that the reassurance is worth the time and money!

Choices

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Cancer scare aside, if you've had it for three weeks, it doesn't sound like a typical boil/abscess, but more like an infected cyst. Since these often recur, seeing a dermatologist is a good idea because he/she might be able to remove it and keep it from coming back. The more you mess with it in the meantime, the more scar tissue will form and the harder it will be to remove they cystic capsule.

This isn't official medical advice, always see your own physician, yada yada.

Melisande

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Wow! Where do you live that you can get an appointment with a dermatologist that soon? Most places I've lived, you could go months waiting for your appointment!

Apparently there's a perpetual shortage of certified dermatologists, somewhat-deliberately maintained by strictly limiting the number of training slots for that specialty.

We're in central Florida. I've already been to this dermatologist, so that helps. Also, I agreed to go to his second office (which is just as close to me as his primary office, so no biggie), otherwise I would have had to wait until Sep. 12th. In general, I've never had a problem getting appointments with any kind of specialist in this area. Usually, two weeks is the standard wait time. I've only had to wait longer (2 months) for a super-specialist -- the best ENT in the area.

I would go to the dermatologist.  Basically, I think this is not a time to "cheap-out."  And  it's not like I'm not all about maximum medical intervention... I had midwife attended birth center deliveries for my kids.

If you worry in the time it takes to get results from biopsies, how is it that you aren't worried at all about not getting a specialist opinion?  I guess maybe because the biopsy means they need to check if something is wrong.  And not going means you are confident it isn't any issue.  Okay, I can understand that.  Hmm, funny that I'm making all these assumptions about you and your thought process...  Anyway, I hope it is nothing and you find that the reassurance is worth the time and money!

Actually, that is more or less what I was thinking! :-)

Also, I also started wondering if the boil or "boil" is lasting so long because my immune system is too suppressed (I'm taking medium dose immunosuppressant medication and got my quarterly blood test just today, so we'll see). Or maybe it's more than just a simple staph infection. Maybe it's community-acquired MRSA or something. In any case, whatever it is, it is not completely clearing up on it own. I truly think it's more likely that it's some infection that my body is not clearing than skin cancer. But we'll see ....

ShoulderThingThatGoesUp

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This is what not having to worry about money is for. Go to the dermatologist; it's not going to make you miss your water bill.

RosieTR

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Best case scenario: not cancer, you get the thing treated for real by dermo.

Worst case scenario: it is cancer and early intervention means a lot less expensive intervention. Some skin cancers are easy to cut out and require little extra treatment beyond that, but can be fatal if left alone. Who knows what would have happened to Bob Marley if he'd had his toe cut off, for example. He didn't, and died as a result.

Some things are not worth going to a doctor (or specialist) for, because it will mean a bunch of expensive tests for something they may still not be able to diagnose and which may just be bothersome. This isn't that.

little_brown_dog

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Your doc is being a good physician. You have a boil on your skin that meets suspicious criteria based on his training. He isnít covering his ass, he is trying to protect yours.

Personally I would make the appointment. We go to doctors for a reason - it doesn't make sense to completely ignore their advice about serious issues like cancer. As others said, you can cancel if it clears up. If you delay the appointment for a week or two, that will give you enough time to confirm your suspicion.

lizzzi

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I hate going to doctors, and I've been an RN for 45 years. However, based on what you've posted, I think you need to go have the dermatologist take a look at that thing. If it's cancer, you need to know. If it's a boil, why is it still there after three weeks? If it is some kind of infected cyst, staph, MRSA, whatever...you need to know...and get it treated.

pbkmaine

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GO TO THE DERMATOLOGIST. I had a small freckle on my upper lip, and my GP told me to see a dermatologist. I went. It was melanoma, but it was in situ, because they got it so early. That was 15 years ago, with no problems since. So go already!

Melisande

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I hate going to doctors, and I've been an RN for 45 years. However, based on what you've posted, I think you need to go have the dermatologist take a look at that thing. If it's cancer, you need to know. If it's a boil, why is it still there after three weeks? If it is some kind of infected cyst, staph, MRSA, whatever...you need to know...and get it treated.

It's nice hearing that I'm not alone in hating doctors. And you're an RN too! I just wish I weren't such a wuss/scaredy-cat about the whole thing.
One thing I fear more than anything else is false positives in tests and incorrect diagnoses. So, I'm fearing not the pain of the biopsy, or bizarrely not even having melanoma (which I should fear), but being told I have melanoma when I do not, then taking serious treatments for an ailment that I do not have. I fear this partially because of my personality I am sure, but also because I went through a time where I think every single ailment I had was misdiagnosed or mistreated. And some of this mistreatment was far from benign (I had unnecessary abdominal surgery, for example). I knew in my mind that going to doctors was still a good thing in general, but it was really hard to feel like it was. Recently, however, they've been more accurate and helpful. Hopefully my luck is turning and I'll keep on having better experiences.

GO TO THE DERMATOLOGIST. I had a small freckle on my upper lip, and my GP told me to see a dermatologist. I went. It was melanoma, but it was in situ, because they got it so early. That was 15 years ago, with no problems since. So go already!

Don't worry. I already have the apt.
« Last Edit: August 29, 2016, 04:07:55 PM by Melisande »

Abe

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I'll go against the grain and say not to see the dermatologist. It's a waste of money and agree that your symptoms are most consistent with an infected cyst. If it changes in size over several weeks, consider a repeat visit. It's not worth the $40 and annoyance of a doctor's visit.

This is not to be construed as medical advice, only random internet stranger advice.

Melisande

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I'll go against the grain and say not to see the dermatologist. It's a waste of money and agree that your symptoms are most consistent with an infected cyst. If it changes in size over several weeks, consider a repeat visit. It's not worth the $40 and annoyance of a doctor's visit.

This is not to be construed as medical advice, only random internet stranger advice.

It's funny. After having made the appointment yesterday, I got up this morning and noticed that the trouble spot had gotten noticeably better overnight. Also, yesterday when my husband came home, he was immediately dubious about my primary's concern. DH: "Really? He thinks it's skin cancer?! It's definitely been changing and getting better!" (I've had him look at it and treat it for me since its in an inconvenient location on my back. So he's had a better view of it, than I have had.)

So, I'm going to cancel the apt. as soon as the office open. Or maybe I'll reschedule for some later date, then cancel that one too if necessary.

Choices

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You might consider taking photos of the lesion every day or two so if/when you see a dermatologist they can see the progression.

Melisande

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You might consider taking photos of the lesion every day or two so if/when you see a dermatologist they can see the progression.

That's a good idea. But it's looking even more like a plain old boil/infected cyst. This afternoon I see a clear white "head" forming in the middle of the dark area.

OK, sorry. Do I win the grossest thread of the day award?


Choices

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I'm glad this is likely just an infected cyst. As I mentioned in the comments above, though, they can recur, and the more times they recur and the more you mess with them, the harder it is to remove the cystic lining. A surgeon or a dermatologist can help you with this.

Tom Bri

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Immunosuppressed? See the doc.

Little things can hang on and get worse, that you could have ignored when you were a youngster.

In the short term, apply hot wet cloths to it, several times a day. If it's a boil, that will help. If it's a boil you can have hubby lance it and drain the puss, then wash with hot soapy water and apply iodine. I'd still worry about the whole immuno-suppression thing though.

I AM NOT A DOCTOR!

Melisande

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Well, I think it is official: My primary is an overly aggressive worry-wart. The good: I can always (and I mean always) get him to prescribe me medication I  need (or think I need). The bad: He's forever scaring the living daylights out of me.

So, I got the blood test results back. My white blood cell count is well within normal, so I do not have to worry about being overly immunosuppressed with the new, increased dosage of my immunisuppressant meds (Azathioprine, in case any one is curious). Levels of glucose, cholesterol and most everything else he described as "beautiful!" However, my Lipase reading came back too high -- about 2.5 times normal ... for this particular lab (144 U/L whereas the reference range is 7-60 U/L). Immediately, he suggests that I have further testing done - that I go to a specialist and see about getting a CT scan to see if there are any abnormalities in my pancreas. Apparently, he suspects that I have pancreatic cancer (!!!) (Yes, he actually said that.)

Um, really?!? First of all, the whole reason I had the blood test done in the first place was to see how my body was handling the new, increased dosage of Azathioprine which can interfere with liver and pancreatic functioning, or at least show up in higher than average liver and pancreatic enzyme readings. So, I asked him, wouldn't the increased dosage be a more reasonable explanation for the high readings? Like I just said, that is precisely what we were testing for! Besides, my Lipase and other enzymes became slightly elevated after I started taking the medication at a lower dose, so it makes sense that they would be even more elevated at a higher dose. When you hear the sound of galloping think horses, not zebras and all that.

Besides, I told him:

1) I am still young (52) and have absolutely none of the risk factors for pancreatic cancer. I am not and have never been overweight; I have never smoked; I am not African-American (a risk factor); I have a large extended family in which not a single person has ever died of cancer (and, besides non-melanoma skin cancer, only 2 family members have ever had any cancer at all -- very early and easily treatable  breast and prostate cancer.)

2) Pancreatic cancer is a rare disease and even rarer for someone with no risk factors.

3) There are no truly effective treatments for pancreatic cancer and the 5-year survival rate is abysmal, so really why bother myself with it?

So, I suggested that instead of rushing off to a specialist to get a CT-scan (which of course would pump more radiation into my body), I'm just going to either wait until I see my rheumatologist later in the month and see what he has to say or make an executive decision and move myself temporarily back to the lower dose of Azathioprine, which was just as effective than the higher dose and what I was going to try to get the rheumatologist on board with anyway. Then, I'll go back for another blood test in another month and see how the Lipase is doing.

Oh, but wait, there are indeed other abnormalities on my blood test. My red blood cell count, hemoglobin, hematocrit were all very slightly below the normal range. He suggests that I see a gastroenterologist to see whether or not I have bleeding in my intestinal tract. He says they can do an endoscopy. But, wait, I've never noticed any bleeding. I have no other symptoms (and I don't even feel particularly tired). He says, well there can be microscopic bleeding, that's why it's good to have an endoscopy.

But, wait! Once again, like increased liver and pancreatic enzymes, anemia is also a potential side effect of Azathioprine. In fact, that is one of the reasons why I had the test in the first place, to see whether the increased dosage of the meds were making me anemic. My primary hemmed and hawed for a while, but finally admitted that it was indeed more likely that these abnormalities were due to the increased dosage of the medication than a combination of pancreatic cancer and intestinal bleeding.

His attitude is well, best to be on the safe side. What can it hurt to have every thing checked out? I told him that there was indeed a cost. Well, obviously it costs me co-pays, but also all these appointments and testing take time. And, they very well might lead to more worrying instead of less. Let's say I have a scan of my pancreas and it's not totally perfect. Let's say they see a tiny spot. Well, it's not like there are going to stop there. They are going to have to do a biopsy and probably more testing. And, all the while I'll be worrying about my pancreas instead of enjoying life, when I am pretty goddamn sure I don't have this cancer.

Anyway, I don't want to go on about this any more than I already have. The fact is that all this testing and medical worrying is so incredibly wasteful (non-Mustachian) it really pisses me off. Sure, most people only think of the co-pay. But why on earth are our health care insurance premiums so incredibly high? Well, it is just this kind of overtesting that is one culprit.

OK, I will descend from the soapbox now.

catccc

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If you are in such disagreement with your PCP's ways, I suggest you find a different provider.  Because what if one day his concerns are warranted, but you are just used to brushing him off?

Melisande

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If you are in such disagreement with your PCP's ways, I suggest you find a different provider.  Because what if one day his concerns are warranted, but you are just used to brushing him off?

I very well may find a different provider. However, I am not optimistic because the incentive structure is the same throughout the industry.

Let me explain. From his point of view, he has absolutely nothing to lose (and indeed sometimes much to gain) from suggesting tests for anything that is even remotely possible. He can sleep easy at night knowing he has done everything he can to absolutely make sure there is nothing wrong with me. He might even gain monetarily if I have to go back for extra check-ups. I guarantee you he is not going to spend a single second today worrying that I have pancreatic cancer. And yet, I am left with the worry and all the hassle of additional specialist visits and extra tests if I am to be a good patient.

If, however, he did care to use occam's razor and some sober professional judgement, he could have suggested reducing my medication and retesting my blood at a later date to see whether or not my enzyme levels were still too high. A conservative, rational approach. That way, however, the burdens would be reversed. I could rest easy knowing that we had a rational game plan and I wouldn't even be thinking about pancreatic cancer right now. And I certainly wouldn't have to think about making yet another specialist appointment. Yet, he would have to worry that he might have missed something.

And finally, there is one thing that most people seem to forget: Death is inevitable. Overtreatment and overtesting are not. Everyone must die -- either from non-natural causes or from some kind of illness (apparently there is no such things as simply "dying from old age" anymore). Yet, not everyone must have unnecessary invasive tests or spend every other week or every other day in the office of a different specialist.



So, yes, I might go and see another PCP, but I do not think my current doctor is an exception.


catccc

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If you are in such disagreement with your PCP's ways, I suggest you find a different provider.  Because what if one day his concerns are warranted, but you are just used to brushing him off?

I very well may find a different provider. However, I am not optimistic because the incentive structure is the same throughout the industry.

Let me explain. From his point of view, he has absolutely nothing to lose (and indeed sometimes much to gain) from suggesting tests for anything that is even remotely possible. He can sleep easy at night knowing he has done everything he can to absolutely make sure there is nothing wrong with me. He might even gain monetarily if I have to go back for extra check-ups. I guarantee you he is not going to spend a single second today worrying that I have pancreatic cancer. And yet, I am left with the worry and all the hassle of additional specialist visits and extra tests if I am to be a good patient.

If, however, he did care to use occam's razor and some sober professional judgement, he could have suggested reducing my medication and retesting my blood at a later date to see whether or not my enzyme levels were still too high. A conservative, rational approach. That way, however, the burdens would be reversed. I could rest easy knowing that we had a rational game plan and I wouldn't even be thinking about pancreatic cancer right now. And I certainly wouldn't have to think about making yet another specialist appointment. Yet, he would have to worry that he might have missed something.

And finally, there is one thing that most people seem to forget: Death is inevitable. Overtreatment and overtesting are not. Everyone must die -- either from non-natural causes or from some kind of illness (apparently there is no such things as simply "dying from old age" anymore). Yet, not everyone must have unnecessary invasive tests or spend every other week or every other day in the office of a different specialist.



So, yes, I might go and see another PCP, but I do not think my current doctor is an exception.

IDK, my doc and my kids doc (different docs) are really reasonable about this kind of stuff.  Neither one hands out antibiotics like candy.  From my doc, I get a lot of "If you are worried about (insert issue), I can refer you to a specialist, but because of x, y, and z, I'm not particularly concerned."  My kids doc didn't even fuss about my alternative vaxing schedule.  You might be surprised what you find out there.  I never feel like our docs are acting out of monetary or CYA kind of intentions.

Maybe your doc isn't exactly an exception, but that doesn't mean he is "the rule," either.

MayDay

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You should definitely change doctors. 

Ye they can be harder to find, your best bet is to ask around.  I tell everyone who asks how amazing my dentist is, because he waits and watches small things, and doesn't jump to DRILL BABY DRILL.  You can find the same in a doctor. 

We had a pushy pediatrician- always scripts, but when I pushed back he would admit that we could "watch and wait" for a few days, and magically most of the time, by 2 days later it was clear we didn't really need the antibiotic.  The visits were always a bit stressful because I had to pep myself up to argue with him.  We switched, and are much happier. 

Melisande

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If you are in such disagreement with your PCP's ways, I suggest you find a different provider.  Because what if one day his concerns are warranted, but you are just used to brushing him off?

I very well may find a different provider. However, I am not optimistic because the incentive structure is the same throughout the industry.

Let me explain. From his point of view, he has absolutely nothing to lose (and indeed sometimes much to gain) from suggesting tests for anything that is even remotely possible. He can sleep easy at night knowing he has done everything he can to absolutely make sure there is nothing wrong with me. He might even gain monetarily if I have to go back for extra check-ups. I guarantee you he is not going to spend a single second today worrying that I have pancreatic cancer. And yet, I am left with the worry and all the hassle of additional specialist visits and extra tests if I am to be a good patient.

If, however, he did care to use occam's razor and some sober professional judgement, he could have suggested reducing my medication and retesting my blood at a later date to see whether or not my enzyme levels were still too high. A conservative, rational approach. That way, however, the burdens would be reversed. I could rest easy knowing that we had a rational game plan and I wouldn't even be thinking about pancreatic cancer right now. And I certainly wouldn't have to think about making yet another specialist appointment. Yet, he would have to worry that he might have missed something.

And finally, there is one thing that most people seem to forget: Death is inevitable. Overtreatment and overtesting are not. Everyone must die -- either from non-natural causes or from some kind of illness (apparently there is no such things as simply "dying from old age" anymore). Yet, not everyone must have unnecessary invasive tests or spend every other week or every other day in the office of a different specialist.



So, yes, I might go and see another PCP, but I do not think my current doctor is an exception.

IDK, my doc and my kids doc (different docs) are really reasonable about this kind of stuff.  Neither one hands out antibiotics like candy.  From my doc, I get a lot of "If you are worried about (insert issue), I can refer you to a specialist, but because of x, y, and z, I'm not particularly concerned."  My kids doc didn't even fuss about my alternative vaxing schedule.  You might be surprised what you find out there.  I never feel like our docs are acting out of monetary or CYA kind of intentions.

Maybe your doc isn't exactly an exception, but that doesn't mean he is "the rule," either.

You give me hope! :-)

You should definitely change doctors. 

Ye they can be harder to find, your best bet is to ask around.  I tell everyone who asks how amazing my dentist is, because he waits and watches small things, and doesn't jump to DRILL BABY DRILL.  You can find the same in a doctor. 

We had a pushy pediatrician- always scripts, but when I pushed back he would admit that we could "watch and wait" for a few days, and magically most of the time, by 2 days later it was clear we didn't really need the antibiotic.  The visits were always a bit stressful because I had to pep myself up to argue with him.  We switched, and are much happier. 

I have been thinking about it on and off for a while. Maybe this craziness will give me the incentive I need.

I cannot believe how PO'd this got me today. Typically, I am relatively level-headed. I am calming down some. But I did some more on-line research about lipase levels, lipase tests and pancreatic cancer. First, I read that in order to get an accurate lipase level reading, you need to fast before your blood test. I definitely was not fasting before the test (was not told to fast.) In fact I totally pigged out the night before and had a normal sized breakfast. Second, many sources on line cite 0-160 U/L as the normal range for lipase, not the more narrow range my lab uses. My levels are definitely lower that 160 U/L, so in some interpretations my levels would actually be normal after all. And finally, believe it or not lipase levels are not a signal of pancreatic cancer in any case. (Less than 50% of people diagnosed with pancreatic cancer have elevated lipase. They typically have other suspicious symptoms.)

Grrr. On to find a new doc.

Choices

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You have many valid points. About the normal lipase levels, though, "normal" depends on the assay of the particular lab, so you have to use their reference range rather than what you find on the internet. For some labs this is quite low and for others "normal" is up to 400. It just depends on the type of test they use.

aperture

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I have never heard of anyone collecting a lipase level for routine evaluation.  I am not an internist, but it seems like your primary may not be much of one either. All those referrals out to specialists suggests that he lacks confidence, or is getting kick backs from these other docs. Move on to a new physician. My $0.02.

Also, what the heck are you doing seeking medical advice on a financial blog? And what are so many of us ready to tell you what to do?  -Ap.

Choices

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I have never heard of anyone collecting a lipase level for routine evaluation.  I am not an internist, but it seems like your primary may not be much of one either. All those referrals out to specialists suggests that he lacks confidence, or is getting kick backs from these other docs. Move on to a new physician. My $0.02.

Also, what the heck are you doing seeking medical advice on a financial blog? And what are so many of us ready to tell you what to do?  -Ap.

It seems as though many of us are physicians.

Dezrah

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Re: Is my primary just engaging in a little CYA? Or should I see a specialist?
« Reply #29 on: September 01, 2016, 12:08:27 PM »
Fascinating saga.

I like to imagine a scenario where some poor woman has been long suffering with vague symptoms but always been brushed off as a whiny, hysterical woman by her doctors.  Then she goes to your (soon to be former) doctor who starts ordering all these seemingly unnecessary tests.  Turns out she's got a relatively rare but treatable condition and her life improves immensely.  I like to picture this only because I prefer to assume such a doctor is not completely wasteful in the medical community.

Case

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Re: Is my primary just engaging in a little CYA? Or should I see a specialist?
« Reply #30 on: September 02, 2016, 09:32:46 AM »
Well, I think it is official: My primary is an overly aggressive worry-wart. The good: I can always (and I mean always) get him to prescribe me medication I  need (or think I need). The bad: He's forever scaring the living daylights out of me.

So, I got the blood test results back. My white blood cell count is well within normal, so I do not have to worry about being overly immunosuppressed with the new, increased dosage of my immunisuppressant meds (Azathioprine, in case any one is curious). Levels of glucose, cholesterol and most everything else he described as "beautiful!" However, my Lipase reading came back too high -- about 2.5 times normal ... for this particular lab (144 U/L whereas the reference range is 7-60 U/L). Immediately, he suggests that I have further testing done - that I go to a specialist and see about getting a CT scan to see if there are any abnormalities in my pancreas. Apparently, he suspects that I have pancreatic cancer (!!!) (Yes, he actually said that.)

Um, really?!? First of all, the whole reason I had the blood test done in the first place was to see how my body was handling the new, increased dosage of Azathioprine which can interfere with liver and pancreatic functioning, or at least show up in higher than average liver and pancreatic enzyme readings. So, I asked him, wouldn't the increased dosage be a more reasonable explanation for the high readings? Like I just said, that is precisely what we were testing for! Besides, my Lipase and other enzymes became slightly elevated after I started taking the medication at a lower dose, so it makes sense that they would be even more elevated at a higher dose. When you hear the sound of galloping think horses, not zebras and all that.

Besides, I told him:

1) I am still young (52) and have absolutely none of the risk factors for pancreatic cancer. I am not and have never been overweight; I have never smoked; I am not African-American (a risk factor); I have a large extended family in which not a single person has ever died of cancer (and, besides non-melanoma skin cancer, only 2 family members have ever had any cancer at all -- very early and easily treatable  breast and prostate cancer.)

2) Pancreatic cancer is a rare disease and even rarer for someone with no risk factors.

3) There are no truly effective treatments for pancreatic cancer and the 5-year survival rate is abysmal, so really why bother myself with it?

So, I suggested that instead of rushing off to a specialist to get a CT-scan (which of course would pump more radiation into my body), I'm just going to either wait until I see my rheumatologist later in the month and see what he has to say or make an executive decision and move myself temporarily back to the lower dose of Azathioprine, which was just as effective than the higher dose and what I was going to try to get the rheumatologist on board with anyway. Then, I'll go back for another blood test in another month and see how the Lipase is doing.

Oh, but wait, there are indeed other abnormalities on my blood test. My red blood cell count, hemoglobin, hematocrit were all very slightly below the normal range. He suggests that I see a gastroenterologist to see whether or not I have bleeding in my intestinal tract. He says they can do an endoscopy. But, wait, I've never noticed any bleeding. I have no other symptoms (and I don't even feel particularly tired). He says, well there can be microscopic bleeding, that's why it's good to have an endoscopy.

But, wait! Once again, like increased liver and pancreatic enzymes, anemia is also a potential side effect of Azathioprine. In fact, that is one of the reasons why I had the test in the first place, to see whether the increased dosage of the meds were making me anemic. My primary hemmed and hawed for a while, but finally admitted that it was indeed more likely that these abnormalities were due to the increased dosage of the medication than a combination of pancreatic cancer and intestinal bleeding.

His attitude is well, best to be on the safe side. What can it hurt to have every thing checked out? I told him that there was indeed a cost. Well, obviously it costs me co-pays, but also all these appointments and testing take time. And, they very well might lead to more worrying instead of less. Let's say I have a scan of my pancreas and it's not totally perfect. Let's say they see a tiny spot. Well, it's not like there are going to stop there. They are going to have to do a biopsy and probably more testing. And, all the while I'll be worrying about my pancreas instead of enjoying life, when I am pretty goddamn sure I don't have this cancer.

Anyway, I don't want to go on about this any more than I already have. The fact is that all this testing and medical worrying is so incredibly wasteful (non-Mustachian) it really pisses me off. Sure, most people only think of the co-pay. But why on earth are our health care insurance premiums so incredibly high? Well, it is just this kind of overtesting that is one culprit.

OK, I will descend from the soapbox now.

You are indeed on the soapbox, and it may one day come back and bite you.

In these situations, go get a second opinion if you doubt your doctor that much.

Do you have any sort of medical training?  Or are you a Google MD?

Melisande

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Re: Is my primary just engaging in a little CYA? Or should I see a specialist?
« Reply #31 on: September 02, 2016, 10:24:25 AM »
Well, I think it is official: My primary is an overly aggressive worry-wart. The good: I can always (and I mean always) get him to prescribe me medication I  need (or think I need). The bad: He's forever scaring the living daylights out of me.

So, I got the blood test results back. My white blood cell count is well within normal, so I do not have to worry about being overly immunosuppressed with the new, increased dosage of my immunisuppressant meds (Azathioprine, in case any one is curious). Levels of glucose, cholesterol and most everything else he described as "beautiful!" However, my Lipase reading came back too high -- about 2.5 times normal ... for this particular lab (144 U/L whereas the reference range is 7-60 U/L). Immediately, he suggests that I have further testing done - that I go to a specialist and see about getting a CT scan to see if there are any abnormalities in my pancreas. Apparently, he suspects that I have pancreatic cancer (!!!) (Yes, he actually said that.)

Um, really?!? First of all, the whole reason I had the blood test done in the first place was to see how my body was handling the new, increased dosage of Azathioprine which can interfere with liver and pancreatic functioning, or at least show up in higher than average liver and pancreatic enzyme readings. So, I asked him, wouldn't the increased dosage be a more reasonable explanation for the high readings? Like I just said, that is precisely what we were testing for! Besides, my Lipase and other enzymes became slightly elevated after I started taking the medication at a lower dose, so it makes sense that they would be even more elevated at a higher dose. When you hear the sound of galloping think horses, not zebras and all that.

Besides, I told him:

1) I am still young (52) and have absolutely none of the risk factors for pancreatic cancer. I am not and have never been overweight; I have never smoked; I am not African-American (a risk factor); I have a large extended family in which not a single person has ever died of cancer (and, besides non-melanoma skin cancer, only 2 family members have ever had any cancer at all -- very early and easily treatable  breast and prostate cancer.)

2) Pancreatic cancer is a rare disease and even rarer for someone with no risk factors.

3) There are no truly effective treatments for pancreatic cancer and the 5-year survival rate is abysmal, so really why bother myself with it?

So, I suggested that instead of rushing off to a specialist to get a CT-scan (which of course would pump more radiation into my body), I'm just going to either wait until I see my rheumatologist later in the month and see what he has to say or make an executive decision and move myself temporarily back to the lower dose of Azathioprine, which was just as effective than the higher dose and what I was going to try to get the rheumatologist on board with anyway. Then, I'll go back for another blood test in another month and see how the Lipase is doing.

Oh, but wait, there are indeed other abnormalities on my blood test. My red blood cell count, hemoglobin, hematocrit were all very slightly below the normal range. He suggests that I see a gastroenterologist to see whether or not I have bleeding in my intestinal tract. He says they can do an endoscopy. But, wait, I've never noticed any bleeding. I have no other symptoms (and I don't even feel particularly tired). He says, well there can be microscopic bleeding, that's why it's good to have an endoscopy.

But, wait! Once again, like increased liver and pancreatic enzymes, anemia is also a potential side effect of Azathioprine. In fact, that is one of the reasons why I had the test in the first place, to see whether the increased dosage of the meds were making me anemic. My primary hemmed and hawed for a while, but finally admitted that it was indeed more likely that these abnormalities were due to the increased dosage of the medication than a combination of pancreatic cancer and intestinal bleeding.

His attitude is well, best to be on the safe side. What can it hurt to have every thing checked out? I told him that there was indeed a cost. Well, obviously it costs me co-pays, but also all these appointments and testing take time. And, they very well might lead to more worrying instead of less. Let's say I have a scan of my pancreas and it's not totally perfect. Let's say they see a tiny spot. Well, it's not like there are going to stop there. They are going to have to do a biopsy and probably more testing. And, all the while I'll be worrying about my pancreas instead of enjoying life, when I am pretty goddamn sure I don't have this cancer.

Anyway, I don't want to go on about this any more than I already have. The fact is that all this testing and medical worrying is so incredibly wasteful (non-Mustachian) it really pisses me off. Sure, most people only think of the co-pay. But why on earth are our health care insurance premiums so incredibly high? Well, it is just this kind of overtesting that is one culprit.

OK, I will descend from the soapbox now.

You are indeed on the soapbox, and it may one day come back and bite you.

In these situations, go get a second opinion if you doubt your doctor that much.

Do you have any sort of medical training?  Or are you a Google MD?

Well, I will be definitely getting a second opinion.

No, I don't have any sort of medical training. However, I am intelligent and have a Ph.D. The degree is in an unrelated field, however, I do know how to do my own research and evaluate sources of data and analyses on and off-line. I can also read people. I can tell when people (including doctors) are bluffing or not being completely honest with me. They hem and haw. They don't look you in the eye. Etc., etc.,

I also think it is crazy that intelligent people should be told not to use the internet to think about their own medical issues and only believe what doctors have to say. In both cases (i.e. using the internet and listening to doctors) you have to use your own judgment. It is up to every individual person to ask themselves: "Is this just some whiny, hypochondriac spouting forth about their symptoms on some forum?" or "Is this an article in a good journal about a well conducted study?" (for on-line resources). Similarly, for visits to the doctor's office: "Is this a doctor who is trying to drum up business/cover his ass, etc.? Or is this someone who is truly using medical judgment and following evidence-based medicine?" And of course, every single medical school has someone who graduated last in their class.

Besides people have different levels of tolerance for ambiguity. Some people really want to be absolutely sure they do not have any possible disease and will go to great lengths (have many tests/procedures) to ease their mind. Other people don't mind living with not knowing, with "watching and waiting," with ambiguity if the odds are in their favor. And, of course, there are many who fall in the middle. There is no one personal medical philosophy that is best. However, if you are one of those people who do not want to have all kinds of useless tests (like me and I'm sure others), then you really do need to ask questions about all the health resources you use. Use your mind and your intuition.

Fascinating saga.

I like to imagine a scenario where some poor woman has been long suffering with vague symptoms but always been brushed off as a whiny, hysterical woman by her doctors.  Then she goes to your (soon to be former) doctor who starts ordering all these seemingly unnecessary tests.  Turns out she's got a relatively rare but treatable condition and her life improves immensely.  I like to picture this only because I prefer to assume such a doctor is not completely wasteful in the medical community.

I actually lived through a similar scenario. I had a mysterious chronic pain condition which worsened over the course of 7 years to the point where I could barely write or type, drive, speak for more than 15 minutes, or lift even a glass of water without pain. I went to doctor after doctor, specialist after specialist, physical therapist after therapist, until finally, I took matters into my own hands and hired people to help me search the internet and look at medical research for any clues. Eventually, I came to suspect that I had two different issues -- a combination of a kind of RSD (reflex sympathetic dystrophy, now called complex regional pain disorder, I believe) and severe repetitive strain syndrome. And guess what? I was right!! After I knew what I had, I eventually figured out how to get both conditions treated. Within a year I was almost totally better. I wound up finding a rheumatologist that prescribed me medication for the atypical RSD. However, while this medication took away some obvious symptoms, like the coldness, discoloration and swelling of my hand and arm, it did not take away most of the burning pain. For that, I again turned to the internet, found both a set of exercises and how to do them (yes, I had been to physical therapists who had not recommended these particular exercises). Lo and behold, within a few days much of the burning pain had gone away. Then, there was the question of the repetitive strain syndrome which was greatly helped by an amazing physical therapist whose existence I learned about, again, on the internet. If it hadn't been for the internet, I honestly do not know how I would have survived.

Of course, I'm sure there are cases where a heroic, insightful doctor does take someone's vague, yet troublesome and persistent symptoms seriously and comes up with a life-saving (or quality of live-saving) diagnosis. And maybe that has been exactly the experience of some people on this forum. I am just saying that getting good medical treatment is definitely more than: doctors = good; internet = bad.

With This Herring

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Re: Is my primary just engaging in a little CYA? Or should I see a specialist?
« Reply #32 on: September 06, 2016, 10:15:34 AM »
*snip*

It's funny. After having made the appointment yesterday, I got up this morning and noticed that the trouble spot had gotten noticeably better overnight. Also, yesterday when my husband came home, he was immediately dubious about my primary's concern. DH: "Really? He thinks it's skin cancer?! It's definitely been changing and getting better!" (I've had him look at it and treat it for me since its in an inconvenient location on my back. So he's had a better view of it, than I have had.)

So, I'm going to cancel the apt. as soon as the office open. Or maybe I'll reschedule for some later date, then cancel that one too if necessary.

I am not a doctor.  I have no medical training.

My mother had a small spot on her nose, where her glasses rubbed.  It would get raw and sore, then heal, then get raw again, then heal.  She would pad the glasses with a bit of tissue, but the issue kept returning.  Eventually, she mentioned it to her doctor, who referred her to a dermatologist.  It was a mild skin cancer, basal cell carcinoma.  She was able to get it scraped off, and her nose is fine now, but she and her doctor are now keeping their eyes peeled for any signs of worse skin cancers.

Anyway, the point is that healing isn't always a sign that all is well.