A forum for any other issues around pancreatic cancer

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worriedinamerica
Posts: 4
Joined: Sat May 03, 2014 5:17 am

need some info from experienced people

Postby worriedinamerica » Wed Jun 04, 2014 7:19 am

ima 34y/o male ive been having oily stools for a year,weight loss of almost 20 lbs total despite having a healthy appetite,mild but constant middle upper left/side Back pain,with mild but not constant Left epigastric pain ,Constant burping/Reflux and bloated(pretty sure Its Ascties ,since i look pregnant(has been going on since November of 2013, also after getting around of food poisoning & almost got so dehydrated i thought i was going to pass out, the next day i awoke with pain in both my legs, my right hurts off & on but my left has never stopped & does hurt in the calf so ,im thinking this is a Blood Clot & that REALLY screams PC,though i have read that malabsorbtion can cause clot disorders ,i have had 2 abdominal CT scans one without contrast and one with oral and IV contrast Both Came back clean( a year ago this coming july ,no sign of Cancer or cancer spread as i am truly convinced i have Pancreatic cancer , had a CA-19-9 and a CBC done last October came back good , i keep hoping that its just something i can live with like Pancreatitis .....? and Not cancer , any suggestions? or similar stories that ended with not dieng a horrible young death?, i mean all of the articals u read about PC says its usually silent until the cancer has spread,well i was having Floating Oily BM's when i had my 1st CT scan , ive had 3 docs basically tell me im crazy for thinking this when all Test last year( i havnt been to see a doctor since late october of last year because i gave up on trying to get an answer other than IBS , i dont have a gallbladder ,its been gone for over 5 years , im just SUPER SCARED that the old CT scans missed everything , & this past year is leading to my young death,i mean i just dont see how i could be out living people without treatment if this was because of pancreatic cancer , i mean my stomach has been weird since November of last year & in PC Ascties is usually the last thing that happens ,i mean ive read were some people had it for as much as 8 months before death,but they were also going threw treatment ,im at 8 months this June without treatment m i keep holding onto the Fact i have a good appetite ,no jaundice since this all started , no Diabetes , i check it every few weeks oh and the pain in my back doesn't go away if i bend over , i still feel it everytime , But i cant let go of the fact that i have been having an oil slick in my BM's for a solid year,Gerd, & a protruded stomach & it not be from missed Pancreatic cancer & my young wife & 2 & 4 y/o kids are going to be the ones to suffer because of it , can anyone give me a glimmer of hope that this is maybe undiagnosed CP or maybe celiac ????i hurt exactly were my pancreas's is ,24/7 thats only been going on for about two weeks, forever & a day it was only my back , & im always just leaving an oil streak allover the toilet with every BM , the thing that makes me mad was when i 1st started noticing this , i told every doctor i saw i was scared it was pancreatic cancer & even the doctor in the ER that did the 2nd CT scan talked to me like i was out of my damn mind & that 1st CT & i quote"just had to had missed something" but he went ahead & did the scan & told me that there was nothing wrong with my pancreas at all & they even looked to see if their was sign's of metesis in my other organ's & their wasnt , but i was still already having oily BM;s That floated, So their had to had been something either inside my Pancreatic Duct, IE a stone , or something Blocking it , a Tumor , i mean if it was so small that a Duel contrasted CT didnt pick it up ,but did find my fatty liver twice , i just dont get it , im tired of feeling like crap, i dont have a lack of appetite,even after this year & it has been a litteral YEAR since this all started & since november that i got the pregnant look, which would be from end stage PC but thats been 8 months & im still alive with no treatment , so *****! i just dont know, i gave up trying to get help from doctors because it was your crazy/IBS .........i mean i know no one on a forum can diagnose me ,but i was just hoping someone out their was like yeah i did the same thing & it was this, that isnt a death sentence sorry for the long dragged out post, im just tired of being told im fine & its all in my head

J_T
Posts: 954
Joined: Sun Mar 24, 2013 8:15 am

Re: need some info from experienced people

Postby J_T » Wed Jun 04, 2014 11:45 am

Hello and welcome to the forum.

I don't think I'm going to be much use but didn't want to ignore your post. Your symptoms do sound familiar but you have had all the tests so I'm as flummoxed as you are and I can tell you are worried.

My best suggestions is to email Jeni or Dianne, the specialist nurses on this site who have a wealth of knowledge and are much better placed to advise you.

support@pancreaticcancer.org.uk

Good luck

Julia

worriedinamerica
Posts: 4
Joined: Sat May 03, 2014 5:17 am

Re: need some info from experienced people

Postby worriedinamerica » Wed Jun 04, 2014 6:16 pm

Thank u for the reply , i am very worried, i have been for a year now(literally as of the end if may)& as like u said i have alot of the "red flags" when it comes to this cancer , and i was even told by my gastro that i do not have cancer anywhere in my body so stop worrying about that ,when i asked another doctor i saw about the pale floating stools, he told me "yeah something is causing u not to digest fat" and that was the last he talked to me about it,this is the same doc that had me do the ct w/o contrast,because he was looking for stones,because of the mild back pain at the time i was having,i mean my weight loss hasn't been dramatic at least according to the scale i use, ive been pretty much the same weight or right about it for several months, i have had pancreatitis before, so im wondering is the reason why nothing showed up was because it was CP and not pancreatic cancer ,only slight nausea ,ive never vomited , not even came to a point i thought i would, alot of my symptoms would be associated with Head PC, but i dont have jaundice & i haven't gotten it since this all started, & i mean everything u read says body or tail PC usually grows large before u notice anything is wrong & i feel like in my heart, how could i be so "lucky" as to have the worlds deadliest cancer ,but a normal ca 19-9 &cbc 4 months into noticeable symptoms & 2 CT scans both see nothing when 1 was for the purpose of looking at my abdomen for cancer ,even my moms doctor said, if the CT was clear he all but does not have PC ,so idk, thanks for the advice i will consult them

J_T
Posts: 954
Joined: Sun Mar 24, 2013 8:15 am

Re: need some info from experienced people

Postby J_T » Wed Jun 04, 2014 9:40 pm

Well if CTs aren't picking anything up it probably isn't pc but something is clearly not right and you need a diagnosis so you can move on.

Again, I would urge you to contact the nurses here who will be more help.

Julia

worriedinamerica
Posts: 4
Joined: Sat May 03, 2014 5:17 am

Re: need some info from experienced people

Postby worriedinamerica » Wed Jun 04, 2014 10:14 pm

thank u again & i have sent them an email to look into this further

Cathy
Posts: 788
Joined: Fri Mar 15, 2013 5:43 pm

Re: need some info from experienced people

Postby Cathy » Wed Jun 04, 2014 10:43 pm

I agree with Julia. You've had CTs which have shown nothing ominous so something else must be causing you to feel poorly.

An ultrasound scan of your tummy might help put your mind at rest re ascites. I'm no medical expert but they need to look at a stool sample if they are as you describe.

As Julia said, the nurses in here may be able to point you in the right direction.

Best of luck

Cathy xx

SueH
Posts: 18
Joined: Fri Mar 21, 2014 9:33 pm

Re: need some info from experienced people

Postby SueH » Thu Jun 05, 2014 9:09 am

Hi

You say you have had your gall bladder removed. The gall bladder stores bile for release when you eat to aid digestion. The lack of this extra bile would make it hard to digest fatty foods leading to fatty stools.
You may need a digestive enzyme like Creon.

Good luck Sue

worriedinamerica
Posts: 4
Joined: Sat May 03, 2014 5:17 am

Re: need some info from experienced people

Postby worriedinamerica » Thu Jun 05, 2014 11:46 pm

Thanks for the reply guys, i wish i could of took some comfort in the results of the CT scans , but i didnt & i never had & as i sit here a year later from my 1st CT scan, its almost like my body knew it was nearing a year & it started Hurting worse than it ever has, it feels like im hurting from my back into the front & not the other way around(but both my upper stomach is hurting at the same time & its obvious its in the same place in my body , the pain is at the bottom of mt left shoulder blade ,& maybe 2 inches across from my left side , still no nausea or vomiting , ive always hoped this was just maybe CP & i know its really Rare for someone my age to have it, but with the other symptoms , i just dont see how its not PC, .........& thats when the anger comes in, when i knew what it was /my fear was a year ago......& as for my gaul bladder, yeah i knew because of the etra bile that could be an issue ,but i just dont know, im scared & i know it wont make it go away, but i just cant make myself go to the hospital, the pain isnt something i cant deal with, but its pretty good lol & also a strage thing has been happening the last week, when ever my BM is formed , it sinks , & this is new , though it still has the oil streak, but its always floated since this started & now its not, idk

Pete12
Posts: 45
Joined: Sun Sep 21, 2014 11:36 am

Re: need some info from experienced people

Postby Pete12 » Tue Sep 23, 2014 11:20 am

worriedinamerica.

I see that your last post was in June, so you may have already sorted out your problem. However, Have you had a blood test to check your Lipase levels? which would check for Pancreatitis. I suffered with Acute Pancreatitis and associated pain (as you describe) for 5 years which then developed into Chronic Pancreatitis which would explain the pale and oily stools you describe.

Cheers
Pete12