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Pancreatic Cancer Group: Introduce yourself and connect with others
Pancreatic Cancer | Last Active: 2 days ago | Replies (1293)Comment receiving replies
Thank you for sharing.
My name is Cealia, HI ya"ll.
My pancreatic cancer was just diagnosed, also by accident. I was diagnosed with NAFELD ( Fatty liver disease). 2cm mass found in head of pancreas. They put a stent in due to biliary blockage.
Real new to this side of the bed as I am a retired nurse.
I have a million ?s as a patient. We are blessed to have retired? Moved to FL only 2.5 hours from Mayo clinic.
Is there a newbi's group.
? About what should I get taken care of before chemo starts...
Replies to "Thank you for sharing. My name is Cealia, HI ya"ll. My pancreatic cancer was just diagnosed,..."
For those newly diagnosed, two pancreatic cancer advocacy organizations have informative sites with comprehensive articles, webinars and the support services they provide. The Pancreatic Cancer Action Network offers patient mentoring and also can provide information on support group meetings in one’s area as well as groups that conduct meetings by Zoom.
https://pancan.org/facing-pancreatic-cancer/diagnosis/recently-diagnosed/Let’s win PC.org is very good at providing breaking information on research and clinical trials.
https://letswinpc.org/newly-diagnosed/
Cealia,
I also am a retired nurse & being on this side of the bed is challenging to say the least. I have stage 4 inoperable pancreatic cancer in the tail which was also found by "accident" due to CT of my lungs as a former smoker. I had a mass on my adrenal gland and mets to my lungs. I am in GA about 2.5 hours north of Mayo Jacksonville. Mayo did the confirmation since I was striking out on referrals to "local" (45 min. away) gastro docs! You are so lucky to find this site early! Took me forever to find this group. The other 2 sites recommended are really helpful too (Let's Win & pancan .org). You may find your nursing research skills getting used to try & find articles that help you deal with nutrition & labs, pain management, drugs, and therapies like acupuncture (helps me), exercise and motivation.
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Hi @cealia56 , Welcome to Florida and welcome to the group.
There's not a "newbie" area of any sort -- just feel free to post whatever questions, answers, thoughts, or comments you might have here on the forum. You can respond to comments within a discussion, start a new discussion, contact other members via the private message utility (envelope icon in top right corner of screen), and so on.
For those newly diagnosed, the "questions to ask your oncologist" in these two threads might also be useful:
https://connect.mayoclinic.org/discussion/newly-diagnosed-questions-to-ask/
https://connect.mayoclinic.org/discussion/which-questions-should-i-ask-my-surgeon-i-think-whipple-is-likely/and
Little things to do before chemo starts depends somewhat on what you've already done, but getting a good pre-chemo baseline will help you know how you're responding to treatment. CA19-9 level, CEA level (in case you don't produce CA19-9) and imaging are significant firsts. Sign up with a patient advocate at pancan.org
Germline (hereditary/inherited) mutation and somatic (external / environmental / spontaneous) mutation testing can help inform your treatment. If there was a biopsy taken with enough tissue remaining, consider having it tested. Pancan.org has a KYT (Know Your Tumor) program where they can pay for having your tissue tested at Tempus Labs. A "Signatera" recurrent blood test can also be built from your biopsy tissue, and used as an additional method to gauge response to treatment. (It's a ctDNA test -- measures circulating tumor DNA in your blood.)
Other stuff to consider could be asking about pre-chemo tests to see if you're allergic to any of the ingredients...
I'm sure we'll think of more, but those are a start. I wish you well, and hope you know we're all here to support each other!