Back and terrified of pancreatic cancer

[k2626]

Hi guys, its been awhile since I posted. As many of you know I started getting stinging nerve pains, extreme joint cracking and muscle twitching last yr. I still have it though it has died down some

In Feb I started to have epigastric pain. Turns out my pancreas is inflammed. My dr ran a CA 19 tumor marker for it and it was slightly elevated. He did this because my dad died of pancreatic cancer. I had a CT, and EUS in Feb then an MRI and MRCP in May-all clear. However, the pain and labs remain (though have not had labs in a few months). My drs are doing a repeat EUS on Tuesday. I am TERRIFIED I have pancreatic cancer. I have had GERD for 2 yrs prior and know now that its a pre symptom of pancan.

Just wanted a place to share my fears, I am so scared

[Wee-Mee]

Hi there,I'm sorry I don't know alot of about any of this but I supose the fact the docs are doing tests and stuff is good rather than sending you on your way.

What is labs? When you're pancreas was inflammed,is that pancreaitis? God I'm not helping am I really? I just feel bad for you,wish I could be of more help :( xx

[Maj]

Hi, I am sorry you are so worried about your health. From what I know about the pancreas from my friends, I think it can become inflamed from gallstones, etc. but can recover again. My friend has a cyst on her pancreas and no treatment is to be given. She was thinking the worst as well but is now carrying on with her life. Please don't think the worse. I know it is normal under the circumstances with your dad but it doesn't have to be the worst scenario. Also GERD is a really common complaint. I suffer from it myself. I hope your next tests all turn out to be negative and you can get on with your life. It is an awful worry but I am keeping my fingers crossed for you and wish you the very best on Tuesday.

Myra:bighug1:

[k2626]

Yes, lipase and ca 19 have been constantly up though have not tested in a couple months, but the pain tells me its still up.

The EUS will provide more info but in the meantime I am scared I have cancer causing this just like my dad did.

[allyp82]

Hi there, I really feel for you. I am petrified of chronic pancreatitis at the moment, and have also had GERD for about 2 years. I don't really know what to say apart from I agree with the previous post that GERD is a common condition, especially in people with anxiety, I also have this. Epigastric pain can be caused by so many minor issues which are also common in stress related conditions, again this is something I suffer from - hence my current fears. I am in the process of being investigated and it is scary, so I can understand how you feel. Please keep us updated. If you are a stressy person then it is far more liely that your symtoms are anxiety related. I'll be thinking of you, Best wishes, Ally x

[k2626]

Why are you terrified of chronice pancreatitis? I may very well have that--and would love that over PC that is for sure. Chronic is not fun to have but is not life threatenign as you may think it is, unless you drink a lot on it. I have done tons of research on it.

It is def. my pancreas seeing as my lab results point that direction. Have you had labs drawn for lipase and amalyse? My pain is upper left, right where the pancreas is. I had a prior scope and its not my stomach, and def is my pancreas again due to labs. The EUS will give me further info. My dr said if this EUS is clear we can move on and officially rule out cancer. Even him telling me it has not yet been ruled out scares the heck out of me.

I wish THIS time it was just anxiety

[allyp82]

I have been worried about chronic because after a death in the family I started drinking too much (about a bottle of wine a day). This lasted for about 5 years, and whilst I have stopped that behaviour now, I have managed to convince myself that I have done some lasting damage to my body because of it - and my symptoms seem to fit it perfectly! I have weight loss, floating stools, pain when I eat or when i am hungry (although mostly in my back with a tender epigastric area), and of course the history of drinking too much.

I have had amylase which was normal - but after reading up on the net, amylase can often be normal in CP - I have also had ultrasound scan - also normal, but again, the net says CP doesn't always show up on the scan!

I am now going to be having a CT scan, and an endoscopy for my GERD. Also I have done a faecal elastase test (not had results yet).

I feel reassured when you right that CP is not always left threatening - some of the things I have read say that only about half the people who get it live for more than 7 years and it scared the hell out of me. For me I think the worst thing would be that I had caused it myself and I would feel so much shame.

The gastro consultant has said she thinks it unlikely that I have CP and that she thinks all my stomach problems are a nervous problem......so we shall see - needless to say I'm not convinced!

What is EUS?? If it was clear before when you were having all the pain, then chances are it will be clear again this time - I am keeping my fingers and toes crossed for you that it is clear.

Always here if you ever want to chat x

[k2626]

I too have done my share of drininking, like you a bottle a wine all to myself. I could have CP, if I do I wont freak out though I know if one has CP there is a higher risk of getting PC with history of it in the family. However, I have frequented a pancreastitis forum and many people on there have CP.They told me only those that continue to drink with CP usually have a shorter life span. There are people on that board who have had it 20 yrs....

What kind of pains are yours? Mine are upper left deep jabs. I too sometimes have the floating stools.

An EUS is like an endoscope but they go into your stomach to look at your pancreas via an ultra sound--its a step above the regular scope. Its suppose to be the best viewing tool for the pancreas. While my last one was clear and MRI I have read stories on the JH PC site of many people whose first rounds of scans were clear only for it to get caught on the 5th scan or so---so that scares the heck out of me,and clearly per my labs and pain something is wrong. I just keep thinking if it were PC this whole time it would have grown enough to have been seen by May. I guess I will know on Tuesday

I am sure you are fine if your labs are clear!

[allyp82]

My pains are meainly centred in the stomach area - but its the pains in the back that are more constant. It can be like a throbbing crampy pain, but also sometimes feel like burning in my stomach area and back - even going up into my shoulders, upper arms and neck. My GP thinks it is anxiety and muscular, but it definately gets worse after i eat. Whilst i don;t drink nearly much now, i still have a couple of glasses of wine at the weekend, and I am sure the pains seem worse after that. I also get shooting pains behind the ribs on the right and left side, and pain in my right shoulder blade (which i know can be a gallbladder pain - hence having the ultrasound previously - no gallstones detected). And the GERD is awful!!!

I have always been more inclined to gain weight - however, now i seem unable to put on weight whatever I eat and a losing weight of about a pound a week - which is not like me. I have had the floating stools for about a year, but i can;t remember if they have always been like that!! I don;t seem to have an oily film in the toilet bowl - which i know can also be a symptom of pancreas problems though.

I just feel like my whole digestive system has gone mad and i never seem to be without pain. Its driving me mad, and i can;t talk to anyone because i feel so embarrassed about it all and the fact that it might be caused by my own behaviour.

How long did you drink a lot for, if you don;t mind me asking?

:flowers:

[allyp82]

p.s. please let me know how you get on on Tuesday - i'll be thinking of you! x

[k2626]

I binged drinked most of my 20's and have drank a lot of wine in my 30's.

I too get floating stools but know mine is due to my pancreas seeing as my labs are elevated. However, I know that floating stools can be due to fat so if you ate a good amount of fat the day before that may be why.


The endoscope should provide you with more answers. I had a regular one two yrs ago when my gerd started and I did it wide awake, it was a breeze!

Thanks for the well wishes. Anxious and looking forward to it at the same time --if it is clear I can move on as my dr says from "doubtful cancer" to "def. not cancer", and perhaps look for other reasons as to why my pancreas is inflammed. I also think maybe lupus as I have had joint, nerve pains and twitching for a yr now-though labs for that have been clear.

[allyp82]

Hi there, how did you get on with the EUS today - have been thinking about you! x

[k2626]

Hi there, thanks for checking in. All okay (thank god) just posted my results. They think soemthing could be brewing due to my labs but no sign of anything-thankfullY!