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.

Profile picture for kakalena @kakalena

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. ???

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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.

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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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Profile picture for kakalena @kakalena

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. ???

Jump to this post

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.

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Profile picture for martyp01 @martyp01

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.

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Thanks for your comment re ca 19-9. I was told the same thing by my oncologist, that it's a trend.

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Profile picture for stageivsurvivor @stageivsurvivor

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.

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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.

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Profile picture for omarcamacho74 @omarcamacho74

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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Hopefully the tumor will shrink so that it can be removed. Meanwhile, be sure to receive second opinions even if they are virtual telephone calls
You want opinions from very high volume facilities.

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Profile picture for kakalena @kakalena

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.

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@kakalena , Thanks for posting. Please let us know how it goes with the nanoknife, and whether they do the procedure "open" or percutaneously. What stage is your cancer, and where exactly is the (main) tumor they'll be treating?

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Profile picture for omarcamacho74 @omarcamacho74

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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Welcome, Omar! My Spanish is limited, but I was able to read and understand your message without the automatic translator because my case was very similar. I could not eat, and lost 10 kg (from 70 kg to 60 kg).

My duodenum (duodeno) was removed during the Whipple surgery. The surgeons have placed two stents to open my stomach outlet through the jejunum (yeyuno). I can now eat a limited diet by mouth, but still receive parentaral nutrition via a feeding tube in my chest.

How are you doing now, after two years of chemotherapy?

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Profile picture for markymarkfl @markymarkfl

@kakalena , Thanks for posting. Please let us know how it goes with the nanoknife, and whether they do the procedure "open" or percutaneously. What stage is your cancer, and where exactly is the (main) tumor they'll be treating?

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Tumor is on the head involving the uncinate process, abutting the SMA,
encircling the SMV and into a smaller vein. The tumor needs to shrink by
25% in order to receive the Nano-knife. Not sure yet how and if it will be
done, but CPMC has done over 100 of this procedure. Ruled out Whipple due
to venal involvement.

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