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Thread: Dad diagnosed with pancreatic cancer

  1. #1
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    Dad diagnosed with pancreatic cancer

    My 49 year old father, who has been struggling with pancreatic issues without treatment for just over two years now, was just diagnosed with pancreatic cancer. He was diagnosed with acute pancreatitis two years ago, and had attributed his occasional GI discomfort since then to the pancreatitis. Recently, though, his symptoms worsened and he began to lose weight, developed something akin to diabetes, etc. Imaging showed a large (around 7 cm) mass in the head of his pancreas, blocking his pancreatic and common bile ducts and his duodenum. He had his biopsy today, so we don't yet know much about the precise diagnosis, but as far as I can tell the doctors seem to believe the cancer (adenocarcinoma, seemingly) has not yet obviously metastasized, but is too large to operate on at this point. No stent was placed, so I'm not really sure what these people thought he was going to do with respect to eating. We are now looking into where we should pursue further treatment.

    I'll update the thread later as I get more details, but for now I was wondering what cancer centers you all would recommend. Given his age and his overall good health, centers that have a reputation for aggressive approaches to chemo, etc. would seem like the best bet, so that's a criterion I'm interested in.

    If you could recommend specific doctors at whichever centers you are familiar with, that would be even better.

    Thanks. I've been spending a lot of time looking through this forum over the past couple of weeks, and though I wished throughout that I would never be in a position to post here, I'm glad I stumbled across this community.

  2. #2
    Moderator Top User ddessert's Avatar
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    I'm sorry about your father. 49 is quite young. Chronic pancreatitis (long-term damage to the pancreas) is one of the warning signs for PanCan. Even so, he may want to meet with a genetic counselor to go over the family cancer history and have genetic testing. That might open up more and possible more effective treatment options.

    With his young age and if he's generally healthy, he'd likely be offered FOLFIRINOX as our most effective standard treatment - no matter where he's treated. Genetic testing might point to other options.

    It sounds like what he needs most is an effective treatment to shrink the tumor. That will also alleviate the side effects. An effective treatment can often make patients feel better as the tumor shrinks away from the various ducts and nerves.

    More immediately, there are stents possible for the liver bile duct, pancreatic duct, and even the duodenum. It's usually a different procedure (ERCP) than the EUS for confirming the diagnosis. And it possibly requires a different expertise. You can ask about these specifically. Jaundice, dark urine, and/or white stools are common signs that the liver's bile duct is blocked.

    Without the pancreatic stent, and possible even with it, he may need pancreatic enzyme replacements to make up for the enzymes that are not getting through. Creon is an example of this. A cancer center may have an oncology nutritionist to help with digestion and food selection.

    As far as hospital selection, a lot depends on where you are and how far you're willing to travel. Johns Hopkins and MD Anderson are the top 2 PanCan centers in the USA, but there are many super-star PanCan oncologists throughout this and other countries.
    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-Nov 2017 - NED
    Mar 2013-present - NCT01088789
    @pancanology

 

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