awaiting testing and diagnosis and scared

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Im currently awaiting an EUS this will be my first, I had my second acute attack back in June and am so terrified its something more sinister. I know this fear is probably completely unwarranted as I am a 28 year old female; but, still I cant shake the fear of "what if this is pancreatic cancer." I think the not knowing why I am having this or what my pancreas actually looks like is really getting to me, that and the pain that I am still having and of course the other symptoms that come with pancreatitis (abdomen that feels swollen in the middle and on the left side, stools that float.) I am sure were all aware. I just don't know how to stop thinking about it and feel like everytime I turn around I see mention of it, wether on a support group or in the news.. Im going crazy please someone tell me im not the only one who has had this fear, how do you overcome it? 

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  • Posted

    I suffer from this daily, even though I have had a slew of tests that suggest I don't have any sort of tumor (CT, MRCP, etc). The one thing I have told myself is if it is P cancer, I probably wouldn't be doing this well 20 months out from my first pain episode. That, combined with the clear CT scans spread apart by 1 year (and MRCP, bloods) probably means no cancer.  

    The first 6 months or so this not knowing caused me disabling anxiety that impacted my marriage and job. As the pain continued and the tests showed nothing I kept telling myself I probably have cancer of some sort-- liver, bile duct, or the dreaded PC. I also lost my mother at the age of 59 during this time, and was pretty much going crazy and was severely depressed. Overtime I slowly realized that me worrying myself to death was causing so much harm to my life and was adding nothing positive to trying to figure out what was wrong with me. So, I decided to try and tell myself daily that I had done what I could and will do what I can, but worrying only makes my life terrible and it also probably doesn't help my overall health. Our bodies are not meant to be in the fight or flight mode all the time, and this can make you feel pretty rotten if it's on-going. 

    So, although I don't really provide any real solution, I will say that you are not alone. Perhaps your test will show early chronic P or something and then you actually will know what it is that you are fighting. Please keep us posted, as I am thinking about going the EUS route as well. 

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    • Posted

      I keep telling myself that I'm sure they would have seen something by now. Like you said I cant imagine I would have survived this long without someone noticing it but, then the irrational thinking starts and I convince myself I am dying hahaha.. My poor husband probably thinks I've lost my mind.

      I just feel like if I had some answers as to what things look like from an inside perspective I'd probably feel a little better about all of it. I'm sure you understand. Im going back to my gi on Wednesday to try to push for an eus in September (life scheduling issues) have you been able to talk with your gi again?

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    • Posted

      My GI basically said I have to live with it because I don't have any elevated blood work. My GP however is a DO and not an MD, and he is great about trying to figure this out. He was the one that suggested pancreatic enzymes. Ever since I have been on them my digestion is good, dark color stools, no floating, etc. This suggest something is up with the pancreas, even though it's not showing up yet. I guess I'm not in a hurry to do a EUS, as if it shows chronic pancreatitis I wouldn't change how I am treating it now (low fat diet, antioxidants, anti-inflammatories, cbd). The big difference to your case is I never had acute episodes that put me in the hospital. Mine have been more mild and chronic, with pain maybe reaching a 6/10 at it's worst-- that is when I have caffeine.  

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  • Posted

    Wishing you the best just keep your chin up and try not to worry.  I have had two EUS biopsie's on a IPMN Cyst on Branch duct on my pancreas and two new proceedures being trialed around the World (A Phase II Multicentre Trial of Endoscopic Ultrasound Guided Radiofrequency Ablation of Cystic Tumours of the Pancreas RADIOCYST01) and I await a MRI in a few weeks time to see what if my persistant IPMN Cyst is still there.  My fear was that I have pancreatic cancer ( a little family history of pancreatic cancer) the more I read about things the more scared I became.  Funny though the pain I explain to my specialist on my left side below ribs, nausea and sometimes hot sweats just sitting there which was the start of a investigation which lead to the discovery of the IPMN cyst, I was told this isnt related to your pancreas (I still believe it is)

    Anyway again all the best just unfold  with it, take care smile

     

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  • Posted

    I got chronic pancreatitis from Pancreas Divisum (very rare condition you’re born with). It took the doctors over a year to diagnose me. I had multiple tests all come back normal. However what I did learn through my journey was that unless you have a family history of PC, cystic fibrosis or Pancreas Divisum then you don’t run the chances of developing PC at such a young age. The doctor didn’t even think I had chronic pancreatitis because I’m only 38 and that’s not common. It’s more common in the elderly. I had all the symptoms of pancreatitis but my blood work was normal. My endoscopy and ultrasound came back normal. Luckily for me the MRCP showed my two ducts. The symptoms play a big role too. I had lost almost 50 pounds in a matter of months, had debilitating pain, migraines, nausea, vomiting, hair loss, itching, acid reflux and more symptoms. My pancreas specialist advised me normally PC is called the silent killer because you don’t tend to feel pain. The pancreas is past the point of function and there’s no pain but there’s other symptoms like jaundice. If you have been diagnosed with pancreatitis then I would be dealing with a doctor who specializes in the pancreas. My next step is having mine removed, you can live without a pancreas. 
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    • Posted

      Thank you that was very informative! I'm sorry to hear all you're going through however, am glad to hear you know what's causing it; wish it didnt come with the pain and other panky perks.

      I wish they would provide this kind of info on Google lol. I swear anytime I Google any one of my symptoms Google says "you have cancer " hahahaha and of course I'm a nervous wreck for the remainder of the day. Reading all of this has really hooked to calm me down so thank you

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    • Posted

      Dr Google is horrible LOL. I actually requested copies of all my tests. I had a CT Enterography show atrophy of my pancreas. I researched that and found it was associated with chronic pancreatitis. My GP said she saw no reason for my abdominal pain but I pointed out the atrophy from the report. After that the MRCP was ordered by the GI. Most doctors don’t understand the pancreas not even GI specialists. I have been through and learned a lot from my pancreas specialist. Unfortunately it’s hard getting to a pancreas specialist. I don’t have any in my area so I have to travel to see him. I’ve been through six ERCPs and just tried the celiac plexus nerve block. I have a nerve disease therefore I don’t recommend the block for anyone who suffers nerve issues. I am currently suffering an attack and I don’t know if it’s from having the block performed but it’s a doozy attack! My next step is having my pancreas removed. I will be solely dependent on digestive enzymes and insulin but I am sure I can handle it. I’m not currently a diabetic but I have been through a lot of medical issues since 2003. One thing I have learned with the pancreas … the pain and nausea becomes your new everyday normal. I’m so used to symptoms that I’ve forgotten about some. I’m on my second maybe third year knowing I have pancreas issues and I’m okay. The extra worrying won’t do anything except cause more pain. If you’re experiencing pain then rest your pancreas. You do this by not eating solid foods for a couple days. Stick to clear broth and Ensure drinks. Slowly incorporate foods. Eat six small meals rather than three big ones as it’s easier to digest. Eat frozen veggies instead of raw. Watch your sugar intake even if you’re not diabetic. The pancreas produces insulin and digestive enzymes. If it’s not working properly then you’re not digesting properly. An EPI (fecal test) can measure how well you digestive food. I also use heat packs when I’m in pain. I’m allowed to take Tylenol but not Aspirin/Motrin for inflammation. Hope you all feel better soon. 
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    • Posted

      I am glad you have people who listen to and believe you.  I have been on this journey since September 2017.  I am yet to have any kind of diagnosis.  

      Everything comes back normal but yet the pain and the symptoms still persist.  The Doctors treat me as I am crazy. They have me seeing pain management dr.  He says this is muscular, it is not!  I had a injection into my ribs because I say the pain is under my left rib. Hasn’t really helped at all.  I read way to much on the internet.  Don’t know what to do next.

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    • Posted

      My journey wasn’t an easy one. My primary doctor knows that I know my body. I have had a surgery every year from 2003-2016 and some years up to seven surgeries in one year alone. I also have a condition called complex regional pain syndrome. Almost everything gets blamed on that condition. It took me over a year to get to the MRCP diagnosis. Without the ERCP I would not know I have chronic pancreatitis. This is why I request copies of my medical reports. If it wasn’t for my research then I wouldn’t be anywhere today. Even though a doctor says your report is fine doesn’t mean there’s nothing on it that won’t give you an idea of what is going on. 
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  • Posted

    Hi!  I am new to the group.  Like all of you, I have been on crusade to get a definitive diagnosis. I have had bowel issues, pain and fullness  under my left rib, pain that radiates to my back, indigestion and some issues with sweating during the day and night.

    Like all of you, I have had ultrasounds, CT with contract, mri/mrcp, colonoscopy/endoscopy.  Everything came back normal.  All my lab work has been normal. I have seen primary, gastro dr, hem/oncologist (for different reason, although she looked at everything).  They have sent me to a Pain Management dr, he says something muscular.  The only person helping me to find out, believe it or not, is my chiropractor.  Today I had liver enzymes repeated, which also is always normal and lipase. 

    I an TIRED of being scared all the time!

    I hope you all find answers.

     

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    • Posted

      Have you ever had elevated enzymes? I know cp stops elevating and if it's only mild I guess very hard to diagnose.. I wish doctors had a better understanding of disorders and diseases involving the pancreas.

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  • Posted

    I have had my liver enzymes checked numerous times and has always been normal..  I had them repeated again today. I also had Lipase drawn today.  I am nervously awaiting results.  We have chart online so when results post we can see them. Sometimes before the Doctor looks. I, at this point, want answers.  This has been going on since last September.  I hope you get great news!  This does ,most certainly get old!
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    • Posted

      In my case I've had 2 acute attacks that put me in the hospital but can trace this back to 2012.. Like you doctors might think I'm a little crazy but I just want to know what's going on plus me being crazy is definitely not fair to my little girls lol.

      Do you feel your doctor is aware that sometimes after damage to the pancreas the levels stop rising?

      I really hope someone can figure this out for you as well, I think the not knowing drives me the most crazy

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