Need feedback from pancreatic cancer survivors

paclar
paclar Member Posts: 1
in Rare and Other Cancers #1
Hi,

New to this board. Was diagnosed with acute portal vein thrombosis two years ago, and had complete recvoery with collateral veins growing around the blockage. At that time, they diagnosed me with chronic pancreatitis (hyperechoic stranding) and gallbladder problems. They put me on warfarin to thin my blood, and removed my gallbladder in March of this year. I have not been on the warfarin since december of 2011. The oncologist team has been puzzled, and have done bone marrow biopisies and liver biopsies, but have found nothing. I continue to have low platelet counts, and ongoing diarrhea (or more precisely, steatorrhea - fatty stools that float and are oily). I have lost 25 or more pounds, have abdominal problems after I eat, and do have some back pain. My gastro doctor has shrugged it off, says there is nothing he can do about the diarhhea, and will see me in another year. My concern is that they have been so focused on the liver and bone marrow, that they might be ignoring what appear to be more pancreas problems (and symtpoms consistent with pancreatic cancer). Part of the problem with the veins that have bypassed the portal vein is that they obscure imaging of the pancreas (or so I was told). Should I push for more testing or imaging, and what kind?.

Comments

  • Oneshot
    Oneshot Member Posts: 153 Member
    #2
    Feedback
    Paclar,
    In 2008 I had the same issues you stated about your stools and I wrote it off as a bad flu bug. This went on for almost 3 weeks! Till one night I had a horrible pain about 2 inches below my sternum that literally dropped me to the floor. My wife heard me and helped me up. While balancing myself I saw myself in the mirror. I had turned yellow everywhere (Jaundice). Long story short I had stage 3 pancreatic cancer. It showed to be around a vein or artery. I honestly can't recall which. The point I'm getting at is two fold.

    1) I found doctors dedicated to pancreatic cancer. Oncologist,surgeon,etc.
    2) Even with all the modern technology available, they didn't know the cancer ,that showed on the scans to be around the vein or artery. Was in fact not attached to it, but looked to be on all scans. They found this out when I opted (like I had a big choice, Right!) for the Whipple. It had encased it but not attached itself to it. Bottom line by the GRACE OF GOD I'm still here.
    A second opinion cannot be a bad thing! Hate to make your medical cost go up but, if you find out you do not have pancreatic cancer. Just think of the stress you will get off your mind, knowing that is not the issue!

    Hope that might help you
    Oneshot
  • sheila_1968
    sheila_1968 Member Posts: 3
    #3
    Pancreatic Cancer
    I felt a great need to respond to your post as fast as I could. I had pancreatic cancer in the duct of my pancreas and one of my lymphnoid. My surgeon, Dr. Mezhir from Iowa City, Iowa is the best doctor I could ever want. This doctor did a Whipple Surgery on me and took most of my pancreas, part of my intestines, and part of my stomach and rearanged things. I am now going thru Chemo and soon to start radiation and chemo combined and after that another 3 months of chemo alone. This all started in July of last year I started getting Pancreatitis. I had this 3-4 times in a matter of months. The paine in your back and losing weight were all symptoms I had and actually still have at times now. I had the steatorrhea exspecially right after surgery. My body does not digest things and get enough nutrician out so I have to take Creon 4 times daily to help me keep some weight on and to get some nutrician. Second opionions are always a good idea. If the doctor here where I live did not go down my throat with a scope; I forgot what its called sorry, and did a biopsy we never would of known I had cancer. I have had a few CT scans and also MRI's they are absolutely a plus to see what is going on. I wish you well and I hope you demand the help you need. You are in charge of your treatment and you deserve the best.

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