Absolutely terrified about the possibility of PC

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Hello, everyone.

I'm aware that everyone has bigger problems than myself but I'm honestly terrified with no one to talk about this so here I am.

I'm a 24 year old male terrified about the possibility of having PC. I know many are suffering from this terrible illness and watching my grandfather pass away from colon cancer was traumatic enough for me to always be worried and afraid about cancer.

And I have to be honest, I have not been taking good care of my body for the past 6 years or so and after a couple of symptoms, I'm absolutely terrified about the possibility of having pancreatic cancer.

I was perfectly fine until symptoms began on the first week of April. I had gnawing, swollen feeling in my lower left abdomen that later continued to my lower left back. I was feeling very unwell and had a very quick loss of appetite. I started having a mixture of constipation and diarrhea. This caused me to go to the doctors whom I explained about my fear of cancer and he prompted me to get a blood test, urinalysis and stool test. Fatigue started but day after day, the pain was slowly going away. I tried my best to keep myself calm. Blood test came back normal except for some abnormally high ketones (which doctor told me I shouldn't worry about as I wasn't eating for a while) and slightly raised platelets and WBC which could suggest an infection. I was diagnosed with viral gastroenteritis and the doctor I went to for a second opinion thought the same. 

A week went by and it seemed like I was recovering and by sunday after two weeks, I was in perfect condition. I had lost 9 lbs from the previous ordeal and I was gaining my weight back... until I had some alcohol and spicy food (stupid of me, I know) - the same kind of spicy food (curry) that I had before the sudden onset of symptoms. I felt unwell again, all the symptoms returned, especially fatigue and loss of appetite, except for pain. I went to the doctor whom I asked for a second opinion who listened to my symptoms and believed it was because of the intake of food even when my digestive system wasn't ready for it. I started losing weight again. But again after a week or so, I was starting to get better until all of a sudden this Monday, I had a sudden loss of appetite, zero and extreme fatigue (not the breathless kind, just want to keep sleeping and don't want to get out of bed). I also started feeling as if something was stuck in my chest everytime I forced myself to eat something (I feel nauseaous everytime I eat and everything is just tasteless). I panicked especially more when I realized it kind of goes away when I bend over, which I'm reading is what happens with the problems in the pancreas. It's been almost 6 days and I still haven't gained my appetite. I go through most days on just two banans and a yogurt and struggle to eat them. I'm scared to go on the scale but I'm pretty sure I've lost more lbs, at least 15 or 16lbs since the start of April. No matter how much search I do, nothing is close to my symptoms as pancreatic cancer. My second opinion doctor (who is my father's friend) and my father (who happens to be a dentist but has general knowledge in medicine) still believes this is mostly anxiety and stress and also being so away from home. They believe that things would have showed up in my blood test but want me to still come in to make sure and to find 'peace of mind'. 

I'm still extremely terrified. Looking to ask for MRI, blood test and possibly colonoscopy and endoscopy and specifically mention that I'm scared that a lot of my symptoms match with pancreatic cancer. But now I'm worried as I hear that even MRI and CT will sometimes miss pancreatic cancer. 

I'm absolutely terrified to the point where I'm scared to look in the mirror every morning afraid I have jaundice. I wake up multiple times at night with muscle pains and struggle with so many thoughts. I honestly am so, so terrified.

Thank you for listening to me sad

PS. Just to add. I've been having sudden problems of digestion (that I never had) which also seems to be a symptom. The weird stuck feeling in my chest goes away over night but returns when I eat something, followed by lots of noise in my stomach. The bottom of my throat also felt a little scratched and burnt which made me hopeful, thinking it might be GERD (but I doubt it would cause such acute loss of appetite and weight loss) but it's gone now and I rarely feel heartburns. 

I just don't see any other diagnosis that would match my symptoms that have continued for such a long time.

1 like, 15 replies

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15 Replies

  • Posted

    Given your age, it’s unlikely it’s cancer. It took the doctors over a year to diagnose my pancreas condition. I got chronic pancreatitis from Pancreas Divisum (born with two pancreatic ducts that never fused together). The only test that caught it was a MRCP. I would recommend that you start to journal your symptoms. Usually when you have pancreas issues you have debilitating pain, vomiting, acid reflux, pain after eating, pain that radiates to your back on the left side. It’s pain that you can’t tolerate. Usually you have to rest your pancreas for a couple days by not eating. You have to stick to clear liquids only and stay very hydrated. When you have pancreatitis you have to eat a low fat diet and stay away from alcohol because it can trigger an attack. Stress alone can trigger an attack. Your anxiety will cause you symptoms. If you don’t have a family history or cystic fibrosis then it’s very unlikely it’s cancer. However there’s a mutation marker blood test you can ask for to screen for PC. You need a GI specialist because a general doctor won’t know what to look for. I would stay off the internet because it’s only going to make you more anxious. There’s many conditions that mimic pancreas symptoms. My GI specialist thought my symptoms were IBS related until they found out I had two ducts (very rare). Ask for a MRCP, it’s the only noninvasive test that really looks at the pancreas without causing a pancreatitis attack. 
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    • Posted

      Thank you so much for this reply. It does make me feel a lot better.

      I know that given my age, it's quite rare but it does happen - and finding myself lacking appetite completely and watching myself get thinner and thinner is truly terrifying. I do agree that I've been extremely terrified/anxious these past few weeks, constantly waking up and unable to go to sleep or function properly. I've recently started thinking it might be gallbladder or pancreatitis (which is more common compared to pancreatic cancer where I have almost 1-2% chance of getting it - this odd is honestly what's keeping me sane at the moment) but I just don't have a debilitating pain, just a pressure that sometimes go on and off. I do not have a cystic fibrosis and my only family history is my grandfather who had colon cancer over 50. Another thing that's also keeping me sane is the fact that between that brief interval where I was feeling completely fine, I actually gained 7lbs in a matter of 9 days which I quickly lost again in 4 days or so. I'm just wondering if it's really pancreatic cancer and I have trouble digesting and all, I probably should not have gained that weight but it should have just kept on gradually dropping? I honestly have no clue..

      I do want to ask for the mutation marker blood test but I also read it's sometimes not accurate unless it's quite advanced and yes, I will certainly ask for MRCP.

      Still really terrified, trying to keep myself calm.. Which is incredibly, incredibly difficult.

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    • Posted

      I’ll be really honest with you. I lost almost 50 pounds in a matter of months. I’m already on pain medication due to a nerve condition and everything gets blamed on that condition and I feel that it took longer for me to get my pancreas diagnosis. When my abdomen started hurting, the pain wouldn’t let up, I was vomiting so much and I had no appetite whatsoever. I really thought it was a side effect because I had started a new medication but I stopped the medication, unfortunately the symptoms only got worse. My stomach started to bloat, the pain intensified even though I was on pain medication. I couldn’t keep food down, the acid reflux kept me up at night to the point I had to sleep sitting up. I knew something was off. I didn’t have diarrhea or jaundice and my doctor ordered a blood test which came back negative for pancreatitis. This went on for a year. I had an endoscopy, ultrasound, numerous blood tests all come back normal. I then had a CT Enterography which showed atrophy of my pancreas. I researched it online and found it was associated with chronic pancreatitis. I told my primary doctor what I found (out of her expertise) and was sent to a GI. The GI ordered the MRCP. Once I had the MRCP and the Pancreas Divisum was found I asked to see a pancreas specialist. The pancreas specialist had me get the mutation marker test (ran it twice) and I was advised it was negative. He performed an ERCP and diagnosed my chronic pancreatitis. I have to take digestive enzymes before I eat because my pancreas doesn’t produce them properly. I don’t feel good almost every day but I try and distract my mind away from the pain. I have trouble gaining any weight but I still try. It’s an ongoing battle but it’s a manageable condition if you take care of your body. I also have to take acid reflux medication, and other medication. We’re all going to have symptoms that are different from one another but try not to stress yourself out because it’ll make you feel worse.  I’ve been getting treatment for the past 10 months now and still can’t gain weight. Your weight will fluctuate if you have pancreatitis. Try not to worry. 
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    • Posted

      Thank you for trying to calm me down, I really appreciate it.

      I really hope it's acute/chronic pancreatitis than anything else. I honestly have not eaten almost anything in the past 5 days and with the anxiety and this weird feeling in the chest, feel like I am going to collapse at times. Which I hope doesn't happen. Does this complete loss of appetite also happen with pancreatitis as well? And how long does it really last? I have an upcoming trip back home to get some more tests and I'm so worried if my body is going to even make it there.

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    • Posted

      Yes the complete loss of appetite is normal (at least for me). I actually drink two Ensures a day because I don’t have an appetite but I need some sort of nutrition. I have to force myself to eat almost everyday (on the days I’m not resting my pancreas). It’s my new normal. I’m so used to it but sometimes I forget to eat because I have no appetite or the nausea is just too much even though I’m on nausea medication. I can’t handle spicy foods anymore and I don’t drink because it’s not worth an attack. I really don’t have any desire for alcohol either. I hardly drank before I found out I had this condition and I don’t recall getting an attack after a drink but because I have experienced a full blown attack, I don’t ever want to go through that again if I can prevent it. I’m still young (38) and I want to see my kids graduate. The pain in your chest can actually be heartburn. I know that seems silly but it’s a symptom of pancreatitis and it can feel like there’s a ton of pressure on your chest making it hard to breathe at times. If that’s the case try some over the counter Prisolec which might help but might not be strong enough. If you have a hobby, you really enjoy doing that’s simple enough to do sitting down, try doing it when you’re in pain. Try to distract your mind. I do this all the time and it helps. I also eat an orange because it helps with inflammation (I can’t drink orange juice because it upsets my stomach, I know it’s weird). I also use heat packs on my abdomen and back. They do this in the hospital as well and it helps. The leaning forward doesn’t really work for me but may work for you. I also developed kidney stones and it’s hard to differentiate that pain sometimes because I have so much going on with my body but my pancreas problems caused the kidney stones. Stay very hydrated! I learned my lesson the hard way. I hope you find some comfort in this forum that eases your mind. 
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    • Posted

      I'm so sorry to hear about your condition sad That actually sounds horrible and I really sincerely hope you get better.

      I'm actually starting to think this might not be pancreatitis. The weird feeling is now moving around my chest for some reason. Last night it was towards my left chest below the ribcage (which made me panic and hope maybe it's pancreatitis). Now it's transformed to a hot, burning feeling on my left top rib, almost near my heart. A lot of noises in my stomach, gas in general although I only drank liquids.

      Starting to hope maybe this was a bad case of GERD or ulcer.. Wishing both of the best of luck!

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    • Posted

      Awe thanks, I’m working on getting better. I take one day at a time. I don’t try and push myself and I listen to my body. I was going every two months for ERCPs to widen my ducts but apparently the ERCPs aren’t helping anymore. I will find out whatever the next step is in June. I think you should ask for an endoscopy and MRCP. The endoscopy can rule out any ulcers, etc. The MRCP will show the entire pancreas and how it’s working. They don’t order ERCPs for diagnostic purposes because they have risks of causing a pancreatitis attack. They will only give you a ERCP if you have chronic pancreatitis or Pancreas Divisum (at least where I live) and I have to travel to see my pancreas specialist because there’s only a few that can perform an ERCP in northern CA. I hate to say this but just drinking liquids can cause heartburn and all kinds of belly noises as well as bloating if you have chronic pancreatitis. However, we are all unique. We will all have similar but different symptoms. Our bodies are built differently and we all tolerate pain differently. I would not rely on blood tests too much. All mine came back normal and I had chronic pancreatitis. However if you have chronic pancreatitis it won’t show in your blood (didn’t know that until my pancreas specialist told me). I didn’t know a lot until I saw my pancreas specialist. You need the right doctor to get to the route cause. I also suggest you get copies of all your tests/reports. I had an ultrasound say my symptoms were in my head but the pancreas was obstructed by gas. I knew my symptoms weren’t in my head and I demanded more tests. Turned out I had two ducts my entire life causing me attacks that wasn’t showing up in my blood and since I have a nerve condition they always want to blame everything on it. You just need to be your own advocate but try your hardest not to stress about anything. Stress and anxiety alone can and will make things worse. Feel free to message me if you have any questions or concerns. Hope you feel better soon!
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  • Posted

    Ask for ca19 test, it’s test for detecting a cancer. It may ease your anxiety if it’s OK.
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    • Posted

      I'm thinking of asking for the ca19 test but worried as I've heard they are inaccurate in diagnosing.

      I'm hoping for gallbladder infection although the weird, burning-like feeling is happening under my left lower ribcage now, terrified again sad

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    • Posted

      My husband experienced your same symptoms.  Got so bad one night he thought he might be having a heart attack. (He is a paramedic).  Turned out to be his gall bladder.  Had it removed the next day and had not had any issues.  
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    • Posted

      Hey Kay!

      Starting to think this could be gallbladder infection (:

      About 3-4 months or so, I remember having a night out with a friend and after having cheesecake late at night, I felt an extreme chest pain that felt like I was going to have a heart attack (really scary!) but it passed the next day and I just assumed it wasn't anything. Thinking back to it, I'm starting to think it was a sign that there was something wrong with my gallbladder and everything's striking me hard right now.

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  • Posted

    Wow.  You really need to listen to what they are telling you.  You have had the tests, you have gotten second opinion. Why do you question the results ??

    If you keep looking on line for answers stop.  

    Please hear what they are telling you.  You don’t have PC.  Thank his and move forward.  No spicy food and no alcohol. If you choose to do those things it sounds like your body will revel.  

    Good luck young man. 

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  • Posted

    Dear Nate32297,

    I'm glad you came to this site. I'm happy to listen and talk with you. The way you describe your fear is so awful. I want you to have peace of mind as well.  I don't know if there is a way to private message or text or even call. I would be glad to talk to you. 

    You mention you're far from home. Can I ask where you are located in general?

    You do have a lot of different symptoms. I can understand your fear.  The loss of appetite and the gnawing pain. That feels like pancreatitis - as least what I go through.  Even if you have that, it doesn't mean cancer. I know you're scared. When are your tests? Let me know how I can help if at all. 

    Sonya 

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