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Thread: Worried about Pancreatic Cancer

  1. #1
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    Worried about Pancreatic Cancer

    Hello, I had an incidental finding of an Islet Cell Tumor last year from an MRI and we did tumor markers but it was low then. But now I'm feeling pain in multiple areas around my torso. I haven't had an EUS biopsy done yet because of financial reasons. I also have floating stools.

  2. #2
    Super Moderator Top User ddessert's Avatar
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    Many types of islet cell tumors (pNET) are benign, but not all.

    You should be checked out at a center that specializes in pNET pancreatic tumors - which I'm guessing you're not because tumor markers do not elevate for pNET tumors. If they were experts, they would know that.

    pNET pancreatic tumors are much slower growing, have different treatments, and much better prognosis than the usual type, adenocarcinoma.
    BRCA2 3398del5
    Dec 2010 - back/abd pain
    May 2011 - Unresectable stage III, 2.5cm tumor
    Jun-Aug 2011 - Gem/Cis, 9 rounds
    Oct-Nov 2011 - Radiation+Xeloda, 25 days in 5 weeks
    Oct 2011-Sep 2012 - shrinking tumor
    Feb 2012 - National Familial Pancreatic Study
    Aug 2012 - Downgraded to stage IIA, PGP
    Sep 2012 - Whipple, T3N0M0, 0.5cm tumor, 0/16 lymph nodes
    Dec 2012 - Quebec PanCan Study
    Sep 2012-May 2018 - NED
    Mar 2013-present - NCT01088789
    @pancanology

  3. #3
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    I see. I have heard of those but I'm not living in America so I don't have access to the centers. I don't know if there's a similar institution in my country, the Philippines. When I went to a GI Surgeon he gave me 3 options. 1. Do the EUS Biopsy. 2. ERCP. 3. Surgery on the tail of my pancreas. He suggested that we do surgery because of the .02% chance of the cells spreading when we pierce.

  4. #4
    Super Moderator Top User ddessert's Avatar
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    It is not surprising to me that the surgeon recommended surgery. Before a surgery, they should at least be doing a PET/CT scan to see where it is.

    The Inspire network has a very strong pNET support group.
    BRCA2 3398del5
    Dec 2010 - back/abd pain
    May 2011 - Unresectable stage III, 2.5cm tumor
    Jun-Aug 2011 - Gem/Cis, 9 rounds
    Oct-Nov 2011 - Radiation+Xeloda, 25 days in 5 weeks
    Oct 2011-Sep 2012 - shrinking tumor
    Feb 2012 - National Familial Pancreatic Study
    Aug 2012 - Downgraded to stage IIA, PGP
    Sep 2012 - Whipple, T3N0M0, 0.5cm tumor, 0/16 lymph nodes
    Dec 2012 - Quebec PanCan Study
    Sep 2012-May 2018 - NED
    Mar 2013-present - NCT01088789
    @pancanology

  5. #5
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    Okay, thanks for the info. I joined their community.

    I found a doctor that referred me to a government hospital which could do an EUS FNAB for cheap. (Free needles) This would be my only option now since I'm just a student.

    However, should I update my MRI scan since it has been a year since I had one? For mapping purposes?

  6. #6
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    Or is it better to get the PET/CT Scan instead?
    Thank you.

  7. #7
    Super Moderator Top User ddessert's Avatar
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    Those seem to be questions that are best answered with a doctor that can talk with you about your current situation and treatment goals.

    It’s unclear to me what is really going on inside: whether it is cancer; whether it is urgent; whether it needs to be removed or monitored; what is the most cost-effective way to deal with it; your other health concerns; etc.
    BRCA2 3398del5
    Dec 2010 - back/abd pain
    May 2011 - Unresectable stage III, 2.5cm tumor
    Jun-Aug 2011 - Gem/Cis, 9 rounds
    Oct-Nov 2011 - Radiation+Xeloda, 25 days in 5 weeks
    Oct 2011-Sep 2012 - shrinking tumor
    Feb 2012 - National Familial Pancreatic Study
    Aug 2012 - Downgraded to stage IIA, PGP
    Sep 2012 - Whipple, T3N0M0, 0.5cm tumor, 0/16 lymph nodes
    Dec 2012 - Quebec PanCan Study
    Sep 2012-May 2018 - NED
    Mar 2013-present - NCT01088789
    @pancanology

  8. #8
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    Yes, my GI ordered a CT scan for the whole abdomen with contrast. I should get the results next week since it's a long weekend in my country right now.

  9. #9
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    BTW how do I setup the thing with the history below the replies. I haven't used a forum in a while. Also thanks in advance.

  10. #10
    Administrator Top User lisa1962's Avatar
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    It is called a Signature. Here is how to do it:

    Next to log out at the top right hand side of your screen you will see settings.
    Click on that.
    Scroll down and on the left hand side you will see edit signature.
    The signature is allowed to be only 500 characters long.

 

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