Is it time to repeat EUS? Had it done Sept 2015.

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I was diagnosed with chronic pancreatitis about three years ago. I was terrified of pancreatic cancer, which was what sent me to the doctor in the first place (I had been experiencing left back discomfort and constipation for several months). I was not comfortable with the diagnosis of CP based only on blood tests (elevated lipase) and ultrasound (nothing showing aside from a fatty liver), and insisted on further image testing. I had a CT scan in April 2015, then an EUS in September 2015, both evidently showing a normal pancreas.

This puzzled me (and still does, frankly), as I wondered how I could be diagnosed with CP if the imaging showed 'normal'. At the time, I was having very little abdominal discomfort, however. It has since increased to daily pain/burning/discomfort over the last couple of months, both abdomen and back. Also burning mouth and tongue.

My question is, should I pursue repeating the EUS? I'm wondering how long it takes for imaging to change. It has been over 15 months since the first one. I'm scared that something has changed, and the doctors won't bother with another EUS because I already had one that came back negative. But again, the symptoms have heightened considerably since then. (The only imaging he ordered recently was an ultrasound on Dec 2nd, which supposedly showed a normal pancreas, although how sensitive regular ultrasounds are for pancreas imaging, I don't know. It did show some kind of nodule on my left kidney, though my doctor said the pathologist was 'hedging' in the report, evidently not exactly sure what this 'nodule' was. My gastro forwarded the report to my GP who wants to repeat the U/S in three months.)

I guess my deepest fear is what if it was early-stage cancerhat didn't show on the CT scan or EUS, and now the doctors won't re-order the tests, as the ones from 2015 were negative. It took quite a bit of pushing to get them to order the initial tests. Even though my lipase is consistently slightly elevated.

What should I do? Is fifteen months a long time ago? Am I due for another EUS? Also, my CA 19-9 was up to 25 on my most recent lab work on Dec 2nd. It was 23 in April 2016 and 16 in May 2015. Under 34 is normal. But mine has gone up each time.

Thanks. Sorry about the long post.

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  • Posted

    I would have it done. Worst case scenario it shows nothing, in which case you're not worse off. If, however, it does show a new obstruction or morphological change then you will need further treatment, the earlier the better IMO.

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  • Posted

    I'm surprised your doctor isn't pursuing another EUS since you're feeling worse. I was diagnosed with CP a year ago (with normal results, I don't get it either), but my doctor is pushing for more tests. I am not in any hurry as the last EUS made me feel worse. I'm just now starting to feel better so I'm putting off tests as long as I can. I would think that if you told your doctor you're feeling worse, they would schedule more tests.

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    • Posted

      Thanks, Nina, that's exactly what I plan to do (request another EUS, I mean). I am due for a follow-up colonoscopy next month (I had one three years ago during which they removed a polyp, so he wanted to repeat it in three years). I'm wondering if they can do an EUS under the same anesthesia. Any ideas on that? I have heard of people having an endoscopy simultaneously with a colonoscopy, but I'm not sure if they do an EUS with a colonoscopy, which is what I need. (Problem with that is, my regular gastro doctor who does the colonoscopy does not do Endoscopic ultrasounds, he's not trained for it, so last time he had to refer me to another doctor to do it. Which would mean another doctor would have to do the colonoscopy too if I were to have them done under the same anesthesia, which I would prefer, if possible. If any of that makes sense.)

      I just feel like I have to fight and battle to get any test other than a basic ultrasound done, especially since the original EUS and CT scan apparently came back negative. The blood tests don't lie, however, and my lipase is consistently elevated. And my CA 19-9 has crept up each of the three times it's been tested. (16, 23, 25) (under 34 is normal). And the pain and burning and discomfort has become constant rather than intermittent as it was in the past. I've lost quite a bit of weight too, of course.

      I'm afraid the doctors have chalked me up as some kind of hypochondriac, when all I've tried to do is be as proactive as I can. I don't feel I'm in a 'proactive' posistion anymore at this point, as crappy as I feel.

      Thanks again for your reply, Nina. I will contact the doctor about repeating the EUS. Hopefully he won't give me too hard of a time. It's not as though I enjoy it. Nor is it inexpensive, even with insurance. (Sorry to sound like a whiner.) Any ideas about the possibility of simultaneous EUS/colonoscopy, please let me know. Thanks again.

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  • Posted

    I can only share what has been said to myself. After being diagnosed with hereditary chronic pancreatitis at 22, the doctors have said they will do a repeat EUS every 2 years to check benign doesn't change. Ive never had a CT scan, said I'm too young?So have mrcp scans every so often.

    Like others have said through if you're feeling worse, why not extra investigation?

    On another note my bf has had a simultaneous colonoscopy and endoscopy but haven't heard or a simultaneous EUS.

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    • Posted

      Hi, thanks for your reply. I called yesterday and made an appointment with the same gastroenterologist that did my first EUS in Sept 2015. He's not my regular gastro (my regular doesn't do EUSs). I have an appt for this coming Tuesday, Jan 3rd, to discuss it.

      I know I'm going to have fight with this guy though, it's always a battle with him. He implies that I need a shrink because I'm so terrified about all of this. I'm sorry, but pancreas issues are some of the scariest health issues in the world. (And I don't make the lab results consistently come back with elevated lipase levels, nor did I make the CA 19-9 levels increase by more than 25% in a year and a half.)

      I'm going to request a repeat of the EUS, and when he refuses, as I'm sure he will, if for no other reason than that the regular ultrasound I had done on Dec 2nd came back 'normal' evidently, I'm going to ask if he'll plan to repeat the EUS in September. That will put it at two years since the first one. As crazy far away as Sept seems, at least he'll hopefully see that I'm trying to be reasonable. (It's damned bullsh*t that I have to play these games, if you'll excuse my saying so. This is my health we're talking about, and it's not as though I request these tests frivolously. I'm scared to death. The pain has not only increased significantly over the last two months, it's become constant, rather than intermittent, as it was before. And these tests cost us hundreds, sometimes thousands, of dollars. In addition to our regular monthly insurance premiums.) I just don't feel comfortable relying on a regular ultrasound for pancreas imaging. The pancreas is just too deep in there. Regular u/s might be fine for other organs, but not the pancreas, in my humble opinion.

      And I'm still confused how/why my regular gastro diagnosed me with chronic pancreatitis nearly three years ago if these imagings keep showing up normal. If it's based on the lab work alone, the elevated lipase, then I would think, based on my increased pain, he would order more sensitive imaging, rather than just blowing me off, which is what he did when I called him yesterday. He just said I could call the other doctor if I wanted and see if he would do another EUS. And of couse he sounded as though he knew the other doctor would refuse.

      Anyway, thanks again for your response, and sorry for rambling and ranting. The pain in my upper left abdomen and left back, and in my shoulders, makes me so frightened and edgy.

      If anyone else reads through this post and can offer any advice, it would be much appreciated. Is it at all usual for chronic pancreatitis to cause aching shoulders, front and back, along with burning left ab and back? I'm so terrified of cancer, I can't even express it.

      Thanks, folks.

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