Avatar universal

Why I've started this group

Welcome all.  I decided to start this group as I have struggled over the last few months to find any support groups for people who have pancreatitis or conditions relating to the pancreas.  I am currently awaiting further diagnosis/treatment after a large pancreatic cyst (which looks like it is starting at the pancreatic tail) was found.  Ultrasound showed a multilocular cyst measuring 28cm x 15cm (yes very large).  I am currently waiting for a CT scan.  I would like people to come here and share their experiences, journeys in the hope that we can offer each other support.  I have no known previous history of pancreatic trouble although there is now some doubt that a previously diagnosed recurrent pleurisy issue was maybe not pleuritic but pancreatic :-/

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1603691 tn?1297996097
Hi Bernie, thank you for starting this group.  I've posted a question that explains what's going on with me in a nutshell, but anyway, like you said I can't find much info on the internet or anywhere.  Heck, when I was in the hospital for weeks they didn't give me much info.  I had gone back to the hospital and my lipase levels were still 3xs where they should be even after getting my gal bladder removed and got info contradicting what little info I got the first time.  I have no insurance or money and I'm in constant pain and don't know if I should go back to the hospital or what.  Sorry, to go on, I'm just alone, worried, poor, and hurting.  I have tons of cancer in my family.  Its just hard, I can't afford to get help and can't keep a job due to the pain and nausea and I've tried to hide it but they'll send me home and try and bear it till I can't walk and sometimes my lungs start hurting, sorry, rambling again, its just a vicious cycle, I don't even have car to take myself to the doctor or hospital.

Have you found out anything from your ct scan yet?  I hope you're doing okay. Thanks again for starting this group.
Helpful - 0
1545021 tn?1322477485
Hello. Thank you for starting this group. And also hello to Eren!

I am joining the pancreatic cyst group! I'm also curious how your CT scan went bernie!

I'm getting an abdominal MRI tomorrow to follow up on a cyst that came up on an abdominal ultrasound Monday (I couldn't get the CT scan because I'm extremely allergic to the iodine contrast).  I have been sick for a while now, episodes of ripping chest pain, stomach bloating, nausea, random vomiting epidodes. I thought I was having gallbladder attacks based on my symptoms so I tried changing my diet to help the "attacks" ( I HATE going to the doctor so I always try to treat it myself first). Then I had another "attack." In between attacks I still have dull gnawing pain in the stomach. Sorry if this is TMI, but I've also been having bowel changes. I've had a couple of white stools (freaky) and sometimes it takes a week before I can have a bowel movement.
This most recent bout of pain lasted about a week. It's mid epigastric and radiates to the left upper quadrant and to my back along with the wierd bowel symptoms. The most alarming part to me was that I got a fever of 101.3. I've only had one other fever in my entire life and it was when I got extremely sick as a child with pneumonia. So for me to get a fever, I know there has to be something really wrong.
I decided I coudn't let it go this time so I went to the doctor and she ordered the abdominal ultrasound. They called me back right away and told me they found a "mass" on my pancreas and it is probably a cyst but they want to investigate further just to "error on the side of caution."

What baffles me is that I am young, 28, I'm healthy, thin, I was athletic until I got sick. I don't smoke, I don't drink! How am I having pancreatic cysts forming?
Of course the cancer scare is running through my mind but I'm so young! I have a hard time believing that it could be something so serious. I'm just kinda baffled right now and just a little nervous.

Thank you for starting the group! I would love to hear from you both and see how you are doing!
Helpful - 0
Avatar universal

First off I must apologise for having not been around for a while, my health took a turn for the worse and I just didn't have the energy or motivation for much.  

Thank you so much for joining the group, I'm really hoping that more people will join as I know that there are a lot of people out there trying to deal with pancreatitis and/or cysts and I hope that by sharing our stories we can give each other support.

I'll be posting a new thread soon to let you know exactly what's been going on with me but if I say I'm not long out of hospital following surgery I'm sure you'll understand.

Try not to get worried about the whole cancer scenario, difficult I know and I know I went down those scary thoughts myself.  

I'll be back on real soon and once again thank you so much for joining.
Helpful - 0
1545021 tn?1322477485
Hey there you are! Good to hear from you. I wish you a speedy recovery!
I'm getting mine biopsied on Friday.. Yikes!

Talk to you soon!
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Avatar universal
I think I know you from *************.  How are you ??  I am still waiting for my next mrcp to check on my cyst.  Will look forward to hearing how you are.  You ,too, Braintoobig.
Helpful - 0
1545021 tn?1322477485
You got bleeped out! Did you mean Daily Strength? Yeah I'm over there although I haven't popped in for a while now.

My "cyst" turned out to be a pancreatic neuroendocrine tumor. I am seeking a second opinion because the surgery they are suggesting sounds absolutely horrific and I want to make sure I'm doing the right thing.
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