Hi,
He looked over all my previous tests he said they all show something but nothing that gives enough to know what is wrong with me. He admitted he does not know what is happening.
I'm scheduled for a colonoscopy and endoscopy this Tuesday.
He is going to send my biopsies out to a specialist to look at
Now here is where I need some help. I'am freaking out. Very casually he mentioned a tumor that is hard to diagnose, that causes diarrhea. the tumor he said had the word endo in front of it think he said it was tied into hormones He said it all matter factly not concerned. So I did not question him.
When I try to google this based on the partial word I get the word endocrine which is cancer Anyone have any insight on the word. Is there another word he could have used. If it is endocrine is it always cancerous
Wish I had someone in there with me.
Help,
kK
Back from new GI doctor need your help
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Ok calming down. Got some more info. Yes there are tumors that can grow in any part of the endocrine system. They can be either benign or cancerous. They can trigger something called carcinoid syndrome.
Thanks for allowing me to panic. Just exhausted so having trouble dealing. Also not happy about my 3rd colonoscopy in 18 months.
Is there anything I should request done during this or the endoscopy?
Hugs,
Thanks for allowing me to panic. Just exhausted so having trouble dealing. Also not happy about my 3rd colonoscopy in 18 months.
Is there anything I should request done during this or the endoscopy?
Hugs,
Hi Kitty,
Please forgive me for casting stones at your new GI doc, but IMO he is little more than a lost fear-monger. He admits he is lost, and yet for no good reason he blurts our a "warning" about some obscure cancer for which you have no markers other than diarrhea. Is he nuts? We all have diarrhea, but that doesn't mean that we have cancer.
FWIW, my doctor did the same thing, when I first went to him with my uncontrollable D. He examined me, and promptly told me that I had colon cancer. He sent me to a GI doc who agreed. They were both wrong of course, and like your doctor, they were both lost.
He should have his butt kicked for trying to scare you when there was absolutely no reason to do so. He has nothing to go on, and he's just talking through his hat. Shame on him.
As far as what to ask for in connection with the colonoscopy, ask that the pathologist stain your biopsy sample slides with a tryptase immunohistochemistry stain when preparing the slides for examination under the microscope. That will allow him (or her) to analyze your slides for mast cell abnormalities (mastocytic enterocolotitis), while he's (she's) at it. If you don't ask for it, he/she is not likely to do it, because most pathology labs don't stock the tryptase-based stain, and without the stain, they will not look for mastocytic enterocolitis (ME). ME is a different form of MC that most GI docs overlook, and ME can cause D that conventional treatments cannot control. To treat ME, you need meds such as Gastrocrom, histame, and antihistamines.
Every "new" GI doc loves to pretend that even though the last colonoscopy showed nothing significant, the one that they are about to perform will show startling new evidence that will allow him/her to magically resolve your case. Yeah, sure. We've all heard that line before. Please don't be surprised if he's still lost, after performing another intrusive, expensive, unnecessary colonoscopy exam. If he doesn't forget to use the tryptase-based stain though, the pathologist may discover that you have ME. I doubt that your previous doctors have ever considered that possibility.
Hugs,
Tex
Please forgive me for casting stones at your new GI doc, but IMO he is little more than a lost fear-monger. He admits he is lost, and yet for no good reason he blurts our a "warning" about some obscure cancer for which you have no markers other than diarrhea. Is he nuts? We all have diarrhea, but that doesn't mean that we have cancer.
FWIW, my doctor did the same thing, when I first went to him with my uncontrollable D. He examined me, and promptly told me that I had colon cancer. He sent me to a GI doc who agreed. They were both wrong of course, and like your doctor, they were both lost.
He should have his butt kicked for trying to scare you when there was absolutely no reason to do so. He has nothing to go on, and he's just talking through his hat. Shame on him.
As far as what to ask for in connection with the colonoscopy, ask that the pathologist stain your biopsy sample slides with a tryptase immunohistochemistry stain when preparing the slides for examination under the microscope. That will allow him (or her) to analyze your slides for mast cell abnormalities (mastocytic enterocolotitis), while he's (she's) at it. If you don't ask for it, he/she is not likely to do it, because most pathology labs don't stock the tryptase-based stain, and without the stain, they will not look for mastocytic enterocolitis (ME). ME is a different form of MC that most GI docs overlook, and ME can cause D that conventional treatments cannot control. To treat ME, you need meds such as Gastrocrom, histame, and antihistamines.
Every "new" GI doc loves to pretend that even though the last colonoscopy showed nothing significant, the one that they are about to perform will show startling new evidence that will allow him/her to magically resolve your case. Yeah, sure. We've all heard that line before. Please don't be surprised if he's still lost, after performing another intrusive, expensive, unnecessary colonoscopy exam. If he doesn't forget to use the tryptase-based stain though, the pathologist may discover that you have ME. I doubt that your previous doctors have ever considered that possibility.
Hugs,
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Tex,
Thanks, I'm not wowed by him. He has come so highly recommended. I actually wanted someone to do another look anf if he is still clueless I'm done with him and all doctors. I will work this out or live with it.
Thanks for the info. And thanks for such a reassuring answer I feel much better
Happy Labor Day
Hugs
K
Thanks, I'm not wowed by him. He has come so highly recommended. I actually wanted someone to do another look anf if he is still clueless I'm done with him and all doctors. I will work this out or live with it.
Thanks for the info. And thanks for such a reassuring answer I feel much better
Happy Labor Day
Hugs
K
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mzh
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FWIW, I had a carcinoid tumor on my appendix, discovered when they went in to fix my cecal volvulus emergency 5 years ago. Getting rid of it didn't change my diarrhea any. LOL My GI doc later ordered a chest xray to see if there was an metastasis b/c I was sweating a lot, IIRC. There wasn't. He explained that many people have them but very few die from them.
I never had the stain done for ME but next time I hope I remember to ask for it.
I never had the stain done for ME but next time I hope I remember to ask for it.
Also have sleep apnea
Kitty,
Other than his somewhat inconsiderate comment about an off-the-wall cancer, he still might show a lot of promise. To be honest, I would rather have a doctor who will admit that he or she doesn't know what is going on (but is willing to do what it takes to find out), than one who pretends to know, and ends up diagnosing IBS.
Maybe he will pleasantly surprise us by performing on a level to match or exceed his reputation.
Happy Labor Day to you, too.
Hugs,
Tex
Other than his somewhat inconsiderate comment about an off-the-wall cancer, he still might show a lot of promise. To be honest, I would rather have a doctor who will admit that he or she doesn't know what is going on (but is willing to do what it takes to find out), than one who pretends to know, and ends up diagnosing IBS.
Maybe he will pleasantly surprise us by performing on a level to match or exceed his reputation.Happy Labor Day to you, too.
Hugs,
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.