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Author Topic: Newbie: Spinning out of control. Carcinoid?  (Read 765 times)

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Offline tmgmom

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Newbie: Spinning out of control. Carcinoid?
« on: January 30, 2013, 11:42:54 AM »
Hi everyone - a Newbie here, although I have looked at this site several times to try to help ground me.  I am a female in my mid 40's who has suffered from HA half of my life.  I have given myself many debilitating diseases over the years:  ALS, MS, Syringomyelia, breast cancer, Ovarian cancer, brain tumors, stroke, heart attack, sarcomas, etc.  To date, I have not been diagnosed with any of these diseases, but I tell you I spent a lot of time convincing myself I was dying.  Back 10 years ago I wasted an entire year of my life CONVINCED I had a nuero disorder.  FInally I said ENOUGH!  I worked so hard to pull myself out of the black hole I was living in and reclaim my body and health.  It is AMAZING the control our mind has over our body in manifesting symptoms.  Anyway, I promised myself I would not go back down that road and the last several years I have been pretty good.  Sure, I can dx myself with cancer pretty quick but I have learned to not let it spiral out of control.  Until now.

On and off over the past 8 years I have a feeling that there is "something" in my mid abdomen right next to my belly button (right side).   Does not cause any pain or discomfort, but periodically I can just feel it in there.   For some reason this past August I got focused on it. Head off to the Dr who runs a localized ultrasound (US) - nothing shows up, she thinks it is a small hernia.  I push back so she does a whole abdominal US.  US report comes back unremarkable but report makes note of a small hemangioma on my liver.  Now this is something I can grab onto and fall into my black hole.  I am now obsessed that this benign hemangioma is a metastasis spot on my liver.  I run off to a Gastro specialist who thinks nothing is wrong but orders an MRI to make me feel better.  Unfortunately, my insurance will not cover a MRI but approves a CT scan.  For some reason I freeze.  I am TERRIFIED to get a CT scan.  I should be all over this test, right?   Why don't I want it?  Well 1) for some reason, to me, CAT scan stands for Cancer And Tumors Scan.  I am convinced it will show "something" that will send me down a road I do not want to travel and 2) why do I want to expose myself to ALL that radiation just to settle my fears.  I don't do the scan but get the US repeated on the liver after 4 months to see if there are any changes.  I go in and they can not find the darn thing.  The tech is looking all over the place, a second tech comes in.   Nothing.

Now I am scared they missed it!  In the meantime I read an article on the ESPN sports guy who has cancer by his appendix (possible carcinoid) and I start thinking of that weird sensation I have had on and off in my abdomen and I start to connect the dots:  slow growing tumor in mid stomach, metastasized to my liver (my spot), carcinoid.  Now I am dying again.  I then read symptoms on carcinoids and they talk about flushing.  Since then EVERYDAY I get a dry flush, no sweating, but chest, upper back, head and face feel soooo warm and at times red.  I can't stop the flushing so I am now convinced that I have carcinoid - even though in my head I know I did not start to feel this flushig sensation until I read about it.   I am getting it now as I write this. 

So, I need help.  I need to know how to distinguish what is real and what is HA.  One day, I am going to get sick, for real.  How do I know when to take it seriously and when to hold back.  Should I get the CT Scan or will that just lead my down a road of more questions than answers and I lose another year of my life again.  I do not want to be naive.  I want to be sensible.

Why am I so afraid to LIVE life and TRUST my body?  Why do I always wait for the world to crumble around me?

What should I do?
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Offline v12alp

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Re: Newbie: Spinning out of control. Carcinoid?
« Reply #1 on: January 30, 2013, 02:25:05 PM »
Let me put you fears of carcinoid to rest once and for all. First of all carcinoid tumors are extremely rare let alone carcinoid syndrome. Carcinoid syndrome which you are referring to by mentioning flushing is a direct product of carcinoid tumor metastasizing to liver. Once liver is affected or riddled with mets it can no longer metabolize hormones/chemicals released by tumors; hence, flushing, diarrhea, abdominal pain, etc. Let's look ligically, hemangioma of liver is extremely common and benign. You have two abdominal ultrasounds done which were negative meaning your liver is perfectly fine, mets free, and carcinoid syndrome is not physiologically possible. You liver is CLEAR!!!!!!! There  is one case mentioned in medical literature that described carcinoid syndrome from appendix tumor without liver involvement and believe it or not, it only occurred during surgery when appendix was removed, and some contents spilled. You do not have it, you do not have red flag symptoms, and should not be bothered with CT because exposure to radiation with low medical value yield is not worth it. If you are willing to take it far request your GI to order urine and blood test for serotonin byproduct 5-HIAA and blood chromogranin (CgA). In your case it would be a waste, your doctors will confirm it.   
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Offline tmgmom

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Re: Newbie: Spinning out of control. Carcinoid?
« Reply #2 on: January 30, 2013, 05:04:03 PM »
Thank you for your response, it was reassuring.  You are correct, my liver was clear!  I need to hold onto that.  I just wish I could get this burning sensation and flushing to go away!
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Offline mollyfin

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Re: Newbie: Spinning out of control. Carcinoid?
« Reply #3 on: January 30, 2013, 05:23:18 PM »
Relapses and setbacks happen to most if not all of us.  Don't feel bad about it.  Just remember, you beat it back once for a very long time, so you can do it again!  You're aware of your anxiety, what it's causing, and what it's doing.  You know exactly what's happening to you, and it's not a deadly disease. 

Also...if it's been in there for 8 years and you're otherwise fine, you don't have cancer.  You just have a lumpy little buddy living in you.  We've all got at least one somewhere :) 

Skip the CT.  Focus on treating the anxiety.  You've done it before so there is NO REASON AT ALL you can't do it again. 
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Offline tmgmom

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Re: Newbie: Spinning out of control. Carcinoid?
« Reply #4 on: January 30, 2013, 07:00:55 PM »
My sense of relief was short lived.  Back to obsessing that the hemangioma on my liver was misdiagnosed and is truly a carcinoid.   And I can not figure out why they could not find ANYTHING on my 2nd scan, not even the hemangioma,.  They can not just  disappear, can they?  Should I go for another scan?  Trying to stay focused, but I am having a hard time.  I have to keep everything inside because this stuff drives my husband crazy!  Glad to have this forum to get things off my chest.

I am NOT going to google carcinoids tonight!!!!  I am NOT going to google carcinoids tonight!!!!  I am NOT going to google carcinoids tonight!!!! 
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Offline v12alp

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Re: Newbie: Spinning out of control. Carcinoid?
« Reply #5 on: January 31, 2013, 02:38:31 AM »
I'm sorry, but your lack of knowledge on the subject of carcinoids is only fueling your anxiety. You do not make any sense other than you are clearly scared of an imaginary illness that was ruled out by two essentially negative scans. Yes, hemangiomas, can involute. US is a very reliable tool in evaluating liver pathology. If you are correlating flushing/burning to carcinoid then you should know that your liver should have been affected by now. Scans show clean organ; hence, your logic is faulty. Your problem is anxiety and not carcinoid. Please distract and distance from the obtrusive thoughts.
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Offline v12alp

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Re: Newbie: Spinning out of control. Carcinoid?
« Reply #6 on: January 31, 2013, 02:39:43 AM »
You are ok! You do not have it. You have anxiety/hormones!
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Offline leiloh

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Re: Newbie: Spinning out of control. Carcinoid?
« Reply #7 on: April 13, 2014, 06:12:06 PM »
Did you have the 24 hour urine test.  I have a lot of your symptoms clean (supposedly) abdominal ct with iv contrast.  Collecting 2 r hour urine now and utterly terrified.   
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Offline Brick5711

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Re: Newbie: Spinning out of control. Carcinoid?
« Reply #8 on: April 13, 2014, 08:33:07 PM »
I have a carcinoid tumor. I didn't have the 24 hour urine test. Carcinoid is not like other cancers. Thinking of you! Hope all goes well.
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