Pancreatic Cancer Group: Introduce yourself and connect with others
Welcome to the Pancreatic Cancer group on Mayo Clinic Connect.
This is a welcoming, safe place where you can meet people living with pancreatic cancer or caring for someone with pancreatic cancer. Let’s learn from each other and share stories about living well with cancer, coping with the challenges and offering tips.
I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by fellow members and volunteer patient Mentors, when you post to this group. Learn more about Moderators and Volunteer Mentors on Connect.
We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Pull up a chair. Let's start with introductions.
When were you diagnosed with pancreatic cancer? What treatments have you had? How are you doing?
Interested in more discussions like this? Go to the Pancreatic Cancer Support Group.
Nothing would surprise me at this point. I will talk to surgeon who may be doing my nanoknife procedure about a 2nd look. I live in rural Northern California and am receiving treatment at CPMC, California Pacific Medical Center. My chemo treatments have been local.
Thanks for your comment re ca 19-9. I was told the same thing by my oncologist, that it's a trend.
I have been told and see online that CA19-9 is a general indicator only. My CA 19-9 started >20,000 in late April this year (2025) and dramatically reduced each time tested until reaching a low of 299. Then it has been going back up a bit to 513. My doctor's response was it was trending around 500, again emphasizing the "trend" instead of absolute numbers.
Hola me diagnosticaron cáncer de páncreas en mayo del 2023 en estadio IV con metástasis en la pared del estómago, cómo el tumor obstruyo el dueno ya no pude alimentarme y de 81 Kilos baje a 50 kilos, me operaron para poder unirme el estómago con el yuyeno y poder alimentarme, no pudieron quitar el tumor del páncreas porque estaban comprometidas la vena orta y otra. Posteriormente me dieron quimioterapia, ya llevo dos años en el proceso.
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February 2025
CA19-9 has never been used as a stand-alone diagnostic test because of a number of pathologies and inflammation causing its elevation. If you have an elevated CA19-9:and acinar, it is likely you have a mixed tumor type with ductal adenocarcinoma. I know of a couple of instances where mixed tumor types were missed on initial morphological examination and when sent to MSKCC for a second review, PDAC was found and the diagnosis changed to mixed PACC and PDAC explaining the presence of an elevated CA19-9.
In those that express CA19-9 with the PDAC form, it can be useful to monitor efficacy of treatment by observing its trend of values. No single point is of value in making a conclusion. It requires several successive measurements.
My pathology report said my pancreatic adenocarcinoma was acinar. I have had my CA 19-9 levels tested for the past 7 months by 2 different labs and they have been up and down, with a high of 123 to a low of 30.
No one has said anything about it not being an accurate test. ???
Hello, my name is Dayana my husband got diagnosed with pancreatic cancer on July 13. On July 17 he had a biopsy done in SLC from that biopsy he developed necrotic pancreatitis and is not doing well. We have our first appointment at Mayo this week. Anyone here had necrotic pancreatitis and pancreatic cancer at the same time?
Acinar cell carcinoma does not secrete CA19-9 so this biomarker is not usable to monitor chemotherapy effectiveness. Only pancreatic ductal adenocarcinoma and mucinous cysts that arise from ductal cells produce CA19-9. In patients whose CA19-9 falls in a range of -3 to +3U/mL, it is a sign they are non-secretors having both negative Lewis antigen alleles Le^a- and Le^b-. The error of margin in the test measurement is+/-3U/mL so when a value is in that range, it is essentially zero.
For those with acinar cell carcinoma, there is the FaceBook group Acinar Cell Carcinoma and a number of us participate in a couple of Zoom meetings of their support group hosted by the SeenaMagowitzFoundation.org. More on the support group schedule of meetings and how to register is on their web page.
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