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Worried about Pancreatic Cancer

Posted , 6 users are following.

james40298
james40298

Hi there

As the title suggests, i am really concerned about Pancreatic cancer. I am 35 years old and in the past few months have started with some very strange symptoms:

March - Kidney area pain and dry mouth.

Tests: Bloods- all normal including Diabetes.

April - Pain under ribcage, both sides. This pain is always there but is more of a discomfort than a pain. It sometimes radiates through to my back but remains constant to the current day.

May - itching, all over the body but mostly on the scalp and face.

Tests - abdominal ultrasound of kidney, bladder, prostate, gall bladder, liver and pancreas. Results were all normal and the sonographer commented that it would be the most straightforward report to write all day.

June - symptoms persist so more bloods taken including liver function, thyroid function, u&e's, amylase, celiac test etc. All results normal except for two slightly raised liver function tests for total serum protein and serum albumin.

From what i can gather, the abdominal pain, back pain and itching all point to pancreatic cancer and there is semingly nothing else to explain these particular symptoms. Naturally i am petrified.

My GP is unconcerned and sees no reason to refer me. His comments were, 'I have an NHS budget to manage and i cant send everyone for scans. As you dont display any major red flags, i see no reason to send you'. I asked him about the causes of my symptoms and he suggested 'medically unexplained symptoms' which is surprisingly high as a percentage of all GP visits.

With my fear growing and a GP who wont refer me on ( i paid for the ultrasounds privately) i am consciois of what to do next.

Is there any logical explanation for these symptoms other than Pancreatic cancer? and if it is this, what action should i take next?

I have a young family and am aware of the importance of early diagnosis for pancreatic conditions.

If you have any thoughts, please help.

James

0 likes, 23 replies

23 Replies

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  • Lapka
    Lapka james40298

    Posted

    Why you haven't done blood test for cancer, it calls CA 19-9

    Let do that for your peace of mind, please. All the best. Danuta

  • DJ-RN
    DJ-RN james40298

    Posted

    I'm a Cardio/Thoracic RN who's seen a lot. When it comes to pancreatic cancer I feel this is one of my strongest areas. I lost my dad at age 58 to pancreatic cancer in 85. I was a new graduate from one of the countries leading nursing programs. When I was at my patent's home one day, I walked into my dads office and while we were talking I noticed his eyes being jaundice. He had noticed too and looking back I know he was quiet concerned. I told him what I saw and went on to tell him that I thought he had hepatitis A because he was a fisherman and ate a lot of fresh and salt water fish. I thought for sure that's what was wrong with him. Never in a million years did I think he had pancreatic cancer. His mother also died from complications related to pancreatitis. In 2010 I went from 170 lbs to 122 lbs. I looked as though I had gotten out of a concentration camp. All of my tests including a CAT scan came back normal. All of my labs were normal. I went from Dr. to Dr. trying to find out what was wrong with me. I was deteriorating quickly. Finally I saw another GI doc who did an endoscopy on me and another CAT scan. He said that it was my gallbladder and I had it removed. He was also suspicious to the CAT's findings. Somehow my scan got mixed up with another scan from someone and even though he wouldn't comment on his suspicions he said something didn't appear normal. About 3 days later they did an EUS on me and saw something that was occluding my main pancreatic duct. They just didn't know what it was at the time. I after several Dr's looked at the film, they said that I had an 8mm stone that was totally blocking the main duct and four other stones in the head of the pancreas. I was finally diagnosed with Chrinic Calcific Pancreatitis. I then saw two surgeons and they told me I needed what's called a Whipple Surgery. Having worked the recovery room at the hospital I knew just how traumatic and serious this surgery was. They cut you open and remove part of the stomach, intestines, spleen and loop your small intestines up and tie the intestines to the biliary tract and pancreatic duct. I told my surgeon that I thought I might be a candidate for an ERCP (Endoscopic retrograde cholangiopancreatography.) Both surgeons told me I wasn't. Back in the 80's I became close friends with a guy who was doing a rotation in Cardiology but was specializing in GI surgery. My

    PCP told me this guy, Todd was head of GI surgery at the Mayo Clinic in Rochester and specializes in ERCP's. I contacted him, sent all of my files/tests and after about a week called me and told me he felt that he could help me. He was going to do lithotripsy on my pancreas like they do for kidney stones by submerging you in water while under anesthesia and try to shatter the stone. After three hours, they were able to. The next day they went in the pancreas to remove all of the shattered pieces and put in a temporary stint. Everything went as planned and I flew back home. Since, I haven't ever been back on pancreatic enzymes or other Meds whatsoever. I still have four stones in the head of my pancreas that are inoperable due to their location. My chance for developing pancreatic cancer went up 35 to 40 fold. They watch me closely and I have an annual CAT to make sure nothing has changed.

    My point is ALWAYS follow your gut and don't EVER give up. ALWAYS get two even three different different opinions. Had I had that very aggressive and Invasive surgery, I don't know where I'd be today. I am truly blessed and thank God for giving me the insight to approach this in a way that I was able to. Just because a pancreatic surgeon, or any surgeon for that matter tells you that you aren't a candidate for something, if you feel otherwise please follow your heart. Had I not been an RN, or, had some medical training, I doubt seriously I would have the knowledge to look for other means of treatment. Sorry for the lengthy reply. I feel if what I had to say helps just one person, it was well worth the time. If anyone has any questions or concerns that I might be able to shead some light on, by all means let me know. I wish each of you peace, direction and good health!

    DJRN ??

    • james40298
      james40298 DJ-RN

      Posted

      Thanks DJ-RN. I do need to pursue this. My real concern around this is the itching. Whilst the abdominal issue could point to lots of things, the itching that goes with it has got me very nervous as there doesnt seem to be many other diagnoses for these two symptoms other than a serious pancreas condition.
    • DJ-RN
      DJ-RN james40298

      Posted

      As a nurse, the only reason I could see where you are itching is because of your bilirubin level in your liver. But, not the pancreas.

      DJRN

    • DJ-RN
      DJ-RN james40298

      Posted

      Often there is also itching when your kidney values are out of whack. Like your creatinine and other values. I'm still confused with itching and the correlation with the pancreas unless it's some of your enzymes being elevated.

    • DJ-RN
      DJ-RN james40298

      Posted

      What did they tell you was causing the itching?

      DJ

    • jamie46803
      jamie46803 james40298

      Posted

      Serum albumin and total protein are elevated with mild dehydration, which you likely were mildly dehydrated if you were fasting for your test.

      Do you know what your numbers were?

    • james40298
      james40298 DJ-RN

      Posted

      They dont know..my Dr thinks it is 'unexplained symptoms' i think they refer to it as functional symptoms, whereby they exist but with no obvious cause. This is why i have turned to Dr Google, because i know something is not right. I hoped my ultrasound would have shown something if there was a problem but the more i read; the more it says ultrasounds are unreliable for pancreas ailments. Even though the sonographer said he had a good picture of it and there was no sign of disease. I am confused.

    • james40298
      james40298 jamie46803

      Posted

      Hi Jamie, yes, the numbers were only a few decimals outside normal range. I think one was 83 where normal is considered between 60 and 80 and one was 51where the norm was between 35 and 50. However, they did result in me needing to ring the GP for an appointment only for him to suggest no major issues and dismiss the symptoms, which is why i am so confused.
    • DJ-RN
      DJ-RN james40298

      Posted

      These are still considered in the range of Norm. Anything could cause them to be slightly elevated. Dehydration being one of them. I would follow up with it but I certainly wouldn't be concerned with a level of 83 and 51.

      DJRN

    • DJ-RN
      DJ-RN james40298

      Posted

      The best method for observing the pancreas is by US, CAT scans with and without contrast and endoscopic Ultra Sound where they get a clear visual of the organ itself.
    • james40298
      james40298 DJ-RN

      Posted

      Thanks again for your input. I really need to get back to my Doctor now. I googled epigastric pain and itchy skin on a symptom checker and only a handful.of things came up, one of which was 'you know what'. I think i need a CAT scan ASAP.

      Thanks for the support guys.

    • DJ-RN
      DJ-RN james40298

      Posted

      That sounds like a good plan. Please let us know. We all care about you!

      DJ

    • james40298
      james40298 DJ-RN

      Posted

      Hey DJRN

      I wonder if you can provide some more insight for me. I had a CT scan with IV contrast dye on Wednesday. Since then i have been struggling with muscle aches and tingling arms and legs. It started around 24 hours after the scan. I called the scan centre to explain what i was experiencing and they suggested these are not known side-effects of the dye.

      Could this be a co-incidence or could there be a link?

      James

    • DJ-RN
      DJ-RN james40298

      Posted

      James, I am almost 100% certain that this hasn't anything to do with IV contrast they use. That dye is excreted from the body within hours after drinking a few glasses of water or liquid. The symptoms you present with, especially "itching" isn't a common or known symptom of one starting to develop Pancreatitis. You mentioned you were worried that you might have pancreatic cancer, etc. James if you had anything going on with your pancreas you and your Dr's would know about it. I'm wondering why you even think that the pancreas is involved? You have zero classic symptoms nor does anything you mention even make one consider that you might. There's two different types of pancreatitis. Acute and chronic. If you were experiencing acute pancreatitis you would be in excruciating pain like none other than you've been before. The pain would be so extreme to where you would be in the ICU receiving IV narcitics and only IV fluids. The only thing you could eat would be ice chips. If you had Chronic Pancreatitis you would have a list of symptoms like none other. Classically, the pancreas is divided into an "endocrine" role, relating to the secretion of (insulin,) and other substances within pancreatic islets and helping control blood sugar levels and metabolism within the body, and an "exocrine" role, relating to the secretion of enzymes involved in digesting substances from outside of the body. Your stools would be foul smelling, they would float due to the fat in them and everything you ate would be going straight through you. James, my advice to you is try to chill out and not stress out over this. I don't know if your Dr. has you on Xanax, Valium, Clonopin or Ativan, but you might want to ask him if one of them would benefit you. You seem very preoccupied with your health and especially Pancreatitis. Something that I know about personally because I have it and second as a nurse because I studied it. It just doesn't sound as though anything you've mentioned would make one think about your pancreas. Again, try to relax and follow up with your Dr. People itch for hundreds of different reasons. Fortunately for you I don't think it's related to Pancreatitis or any other major illness. Good luck.

      DJRN

    • james40298
      james40298 DJ-RN

      Posted

      Hi DJRN and thnks again for the response.

      I received my CT scan results today. There were no issues with the liver or pancreas based on the report. It identified that my stomach was slightly distended and as such, difficult to evaluate. On this basis, the practitioner i spoke to suggested i might have been suffering from acute Gastritis and that some Omazeropole (sp) might help as well as a Gastroscopy.

      The only other findings were a slighty distended bladder and a thickening of the appendix wall.

      I thought i would update you as you have taken the time to respond to my concerns.

      Thanks again

      James

    • DJ-RN
      DJ-RN james40298

      Posted

      I'm glad you updated us. Thank you. Hopefully you will nip this problem in the bud soon. Very good report!

      DJRN

    • ashlea18819
      ashlea18819 james40298

      Posted

      Hi James I am 27 and am experiencing the exact same symptoms as you. I also looked on google and found that pancreatic camcer was the only thing that came up in relation to back/abdominal pain and itching. I am absolutely terrified.
    • DJ-RN
      DJ-RN ashlea18819

      Posted

      Hi, please don’t jump to conclusions and think that you might have pancreatic cancer and/or any pancreatic disease altogether. The chance of you having cancer of the pancreas is EXTREMELY low. VERY low. I myself have Chronic Calcification of the Pancreas and doing fine. I had one 8mm stone removed from within my pancreas that was blocking the main pancreatic duct making it impossible for enzymes to make it to the small intestines to. Reakdown fats, proteins, sugars etc. That was in 2010 and even though I still have four pancreatic stones embedded in the head, I am doing great. No problems at all. Pancreatitis is a gradual progressive disease that usually worsens after time. But not always. It’s coming up for 7 years for me and since having the stone removed I’ve never been on any Meds etc. Again, The incidence  of your having pancreatic cancer is extremely low. 

      DJRN

    • sarah_27613
      sarah_27613 ashlea18819

      Posted

      How are your symptoms now? Have they resolved? Did you find an answer as to what was going on? 
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