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Author Topic: My gastro finally ordered a test i begged for years - now im scared!  (Read 366 times)

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Offline yahoo2000

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For over a year I constantly bugged my GI doctor for EUS endoscopic ultrasound  test, he refused since it was invasive and I had no symptoms of pancreatic diseases,like (pain, nausea, etc), all I have is occasional elevated lipase pancreatic enzymes which he reassured me was benign macrolipasmia) so he gave me a MRCP which has up to 90% specificity in finding pancreatic tumors or disease and it was negative. That with a ct scan should be enough reassurance (but not for me)

Finally I got my diabetes A1C back and it was slightly elevated from 1 year ago, it was 5.6 to 5.9, my primary doctor said it's not signicant jump and is not realted to new onset diabetes that is associated with pancreatic cancer, new onset diabetes is similair to type1, where you lose weight unintentionally.

So I emailed my gastro and told him about my diabetes results and even sent him a study. So he replied via Kaisers email system, that he is now going to refer me to get EUS. The test I always wanted, now that he is ordering it, I am freaking out. Even though common sense tells me he is finding any excuse to refer me to finally keep bugging him. I sent about 30 emails in 12 month period to gastro.

endoscopic ultrasound is the test and it's the gold standard to find anything wrong. My primary doctor thinks it's unnecessary.
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Offline yahoo2000

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Re: My gastro finally ordered a test i begged for years - now im scared!
« Reply #1 on: June 24, 2014, 12:02:10 PM »
I frequent forums dedicated to pancreatitis and pancreatic cancer and have basically been kicked out of both forums by mods, even given a lecture about the old saying "barking up the wrong tree"
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Offline sixpack

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Re: My gastro finally ordered a test i begged for years - now im scared!
« Reply #2 on: June 24, 2014, 05:02:21 PM »
be careful what you wish for.  You may just get what you "wanted".    :yes:

I frequent forums dedicated to pancreatitis and pancreatic cancer and have basically been kicked out of both forums by mods, even given a lecture about the old saying "barking up the wrong tree"

wow, did that make you take stock of what your anxious thinking is doing to you? 

btw--- I am with your primary doctor  AND I agree.  your gastro doc is almost certainly giving in to doing this test so you will will quit bugging him.  Hopefully when you get through this round of tests, you will see what your anxious thinking is putting you through and you will start working (diligently) on what is really ailing you. 


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MOST anxiety occurs on a subconscious level.  JUST because you don't feel consciously anxious or had a day or two of calm doesn't mean your mind & body are relaxed.  It can take months of reduced anxiety before a body goes back to a more non-reactive state

Offline yahoo2000

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Re: My gastro finally ordered a test i begged for years - now im scared!
« Reply #3 on: June 25, 2014, 12:29:47 PM »
Thanks sixpack, hopefully EUS is fine and I can put this behind me for good.
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Offline IAMHEALTHY

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Re: My gastro finally ordered a test i begged for years - now im scared!
« Reply #4 on: June 25, 2014, 02:58:37 PM »
I frequent forums dedicated to pancreatitis and pancreatic cancer and have basically been kicked out of both forums by mods, even given a lecture about the old saying "barking up the wrong tree"

lol I went to one. Cancer forums get real ticked with anxiety folk. Im also worried about pancreas issues. How does your stiol looks. What does steatorrheah look like(if you know this term)?

My A1C has been a 5.3 twice this yr and Im 40lbs overweight and was eating ALOT of sweets,carbs and fat which is why Im also worried

also I meant *stool, not stiol
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Offline yahoo2000

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Re: My gastro finally ordered a test i begged for years - now im scared!
« Reply #5 on: June 26, 2014, 10:59:13 PM »
I frequent forums dedicated to pancreatitis and pancreatic cancer and have basically been kicked out of both forums by mods, even given a lecture about the old saying "barking up the wrong tree"

lol I went to one. Cancer forums get real ticked with anxiety folk. Im also worried about pancreas issues. How does your stiol looks. What does steatorrheah look like(if you know this term)?

My A1C has been a 5.3 twice this yr and Im 40lbs overweight and was eating ALOT of sweets,carbs and fat which is why Im also worried

also I meant *stool, not stiol

Your A1C of 5.3 is great, especially with the unhealthy diet you have.
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Offline yahoo2000

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Re: My gastro finally ordered a test i begged for years - now im scared!
« Reply #6 on: June 26, 2014, 11:08:05 PM »
Well I finally got the answer I've been looking for years. I was finally diagnosed with early chronic pancreatitis at 32 ;( I just turned 32 last week. Most ppl diagnosed with CP are over 55. So most likey they had these same findings if they were to look early enough.

Luckily I have no symptoms, like pain or nausea. I should be grateful. Gastro said I could have lived a healthy life without ever knowing I have signs of early CP, since apparently these signs the doctor found in EUS can happen in nomral pancreas and those without CP.

If you ever read the stories of people dealing with CP, they say the pain from 0-10, is always 10/10 to the point where they cant eat, exercise and live in a world of pain. I hope I do not have that to look forward to. There are no preventative measures besides the basic (don't drink, don't smoke) which I dont. I get biopsy results in 2 weeks, not sure what they are looking for. I was still sedated when doc came in, wife was still in waiting room.

Really bad day for a hypo!!! All I could think now is possible pancreatic cancer later in life or daily pain in the future. So my plan is to change diet, get a gym pass and be the best dad I could be. I wan to see my son throw his first pitch or his first touchdown.
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Offline Kmj023

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Re: My gastro finally ordered a test i begged for years - now im scared!
« Reply #7 on: June 26, 2014, 11:43:08 PM »
I frequent forums dedicated to pancreatitis and pancreatic cancer and have basically been kicked out of both forums by mods, even given a lecture about the old saying "barking up the wrong tree"

They kicked me out of the cancer forum when I was asking about brain cancer lol. :(
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"The only illness that we can't accept is hypochondria."

"Never Google, everyone will catch an invisible tumor!"

"Anxiety is not a doctor. Neither is the internet."

Actual diagnosis : chronic sinusitis.
Google diagnosis : brain cancer.

Symptoms : dizzy head feeling.

Offline Kmj023

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Re: My gastro finally ordered a test i begged for years - now im scared!
« Reply #8 on: June 26, 2014, 11:46:50 PM »
I frequent forums dedicated to pancreatitis and pancreatic cancer and have basically been kicked out of both forums by mods, even given a lecture about the old saying "barking up the wrong tree"

lol I went to one. Cancer forums get real ticked with anxiety folk. Im also worried about pancreas issues. How does your stiol looks. What does steatorrheah look like(if you know this term)?

My A1C has been a 5.3 twice this yr and Im 40lbs overweight and was eating ALOT of sweets,carbs and fat which is why Im also worried
also I meant *stool, not stiol

Yep they sure are. I had someone there tell me she and I had same symptoms and same tumor I saw this after my ct scan and I got mad and said that's not what I needed to hear and then the mod accused me of wanting attention and was rude. Then closed the thread. Lol.
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"The only illness that we can't accept is hypochondria."

"Never Google, everyone will catch an invisible tumor!"

"Anxiety is not a doctor. Neither is the internet."

Actual diagnosis : chronic sinusitis.
Google diagnosis : brain cancer.

Symptoms : dizzy head feeling.

Offline avianwaif

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Re: My gastro finally ordered a test i begged for years - now im scared!
« Reply #9 on: June 26, 2014, 11:55:03 PM »
Kudos to you for sticking up for yourself and for your health even when you were faced with a bunch of eqivocal or negative tests. Your "health anxiety" turned out to be a normal and astute preservation-of-self. I wouldn't call you a "health anxious" person, based on your own correct diagnosis - more like, you're just the most in tune with your body and the one looking out for it the most. You have the vested interest in your life here, and you've invested time and energy wisely.

The same self-diagnosis, backed up after some years by medical workups, thing has happened to me at least 3 times. It's made me a nervous wreck about symptoms, because I can sort-of tell when something's going to end up "not just a cold" or "not just anxiety", you know? That vigilance is always going to be there. I used to think it was bad, but now I see it as good. It's 'saved' me when nobody else could be bothered to care.

Since you have done the research on chronic pancreatitis, look up celiac ganglion blocking and the various surgeries that will alleviate pain in this specific disease. You don't have to be destined to a future of pain. Remember how you got your diagnosis? That's how you will get your treatment. Just keep sticking up for yourself. See a pancreatitis GI specialist and/or a pain management specialist if things get out of control or your primary care doc won't listen.
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Offline yahoo2000

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Re: My gastro finally ordered a test i begged for years - now im scared!
« Reply #10 on: June 27, 2014, 01:18:22 AM »
Kudos to you for sticking up for yourself and for your health even when you were faced with a bunch of eqivocal or negative tests. Your "health anxiety" turned out to be a normal and astute preservation-of-self. I wouldn't call you a "health anxious" person, based on your own correct diagnosis - more like, you're just the most in tune with your body and the one looking out for it the most. You have the vested interest in your life here, and you've invested time and energy wisely.

The same self-diagnosis, backed up after some years by medical workups, thing has happened to me at least 3 times. It's made me a nervous wreck about symptoms, because I can sort-of tell when something's going to end up "not just a cold" or "not just anxiety", you know? That vigilance is always going to be there. I used to think it was bad, but now I see it as good. It's 'saved' me when nobody else could be bothered to care.

Since you have done the research on chronic pancreatitis, look up celiac ganglion blocking and the various surgeries that will alleviate pain in this specific disease. You don't have to be destined to a future of pain. Remember how you got your diagnosis? That's how you will get your treatment. Just keep sticking up for yourself. See a pancreatitis GI specialist and/or a pain management specialist if things get out of control or your primary care doc won't listen.

Thanks for that. Luckily the Dr. who performed the EUS is very well known and has been in many medpub studies.

Basically I got this email from my gastro on what happened with the EUS since I was still sedated, so I just emailed my main gastro and he went over results and emailed me this:


"Hi Mr. fsdfsdfsdf

It simply means that you have a few features of chronic pancreatitis but overall very non-specific.

Biopsy was taken to make sure you don't have autoimmune pancreatitis.

What you have overall is some very NONE specific finding that may suggest chronic pancreatitis but NO definite findings."

So I guess I just have "features of CP"
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Offline roulolox

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Re: My gastro finally ordered a test i begged for years - now im scared!
« Reply #11 on: June 27, 2014, 03:16:09 PM »
That is a very good news !
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