What are the symptoms to look for for pancreatic recurrence?

My husband also had Stage 1B and underwent Whipple surgery in Feb., and completed his Chemotherapy at the end of September. We also worry and are scared of a reoccurrence. He goes for bloodwork and CT scan early January. It looms over us and we are also trying to figure out ways to get back to some form of normalcy. This is very hard because he is dealing with side effects from the chemo still. Hopefully we can put these “worries” towards the back of our brains in between follow-up testing. We too are not sure how this is possible. We wish you courage and strength through your journey. Our daughter recently told him, “recovery” is not a straight line. How true. Take care.

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I was diagnosed as stage 3 in Jan 2021, underwent Whipple surgery and 12 rounds of folfirinox . Monitored. Bloodwork and CT every 3 months, all clear for 2 years after finishing chemo. CA19-9 starting to climb was first indication of recurrence. PET scan clarified areas that CT still could not. Had another 12 treatments of gemcitabine/abraxene (sp?) followed by 25 radiation with capcitibene. Going for follow up bloodwork/CT today to see if this has helped control the cancer. Stay positive - time is your friend as progress continues to be made with treatments.

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Googling for "Recurrence after Whipple" (including quotes) will return a ton of hits. You can narrow that down to more academic/scientific results by starting at Google Scholar ( https://scholar.google.com/ ).

From my own (non-medical professional) journey with PC + recurrence, and surveying the landscape on various forums, "symptom" is perhaps not the best thing to look for because symptoms occur so late in the progression of disease. With bile duct blockage and the resulting jaundice being a first symptom of PC for many people, a patient with stents or Whipple surgery may not experience jaundice, and thus not detect a recurrence until other more insidious symptoms emerge at later stages of the disease.

Anyone who has already had pancreatic cancer and surgery to resect it should know something about their CA19-9 history (levels when they were health vs sick, or if their tumors even expressed CA19-9 at all). CA19-9 seems to be the most affordable and easily accessible way to monitor yourself over time. Increases in CA19-9 seem to be the first indication of recurrence for a lot of people (myself included).

If your tumors don't express CA19-9, there may be other affordable blood biomarkers like CEA that could be indicative. Any patient's own history should identify whether that is the case. Other ctDNA/cfDNA tests like Signatera and Galleri can also be used, but are not so affordable, and maybe not as indicative early on as CA19-9 (again, exactly my case).

Jump to this post

Googling for "Recurrence after Whipple" (including quotes) will return a ton of hits. You can narrow that down to more academic/scientific results by starting at Google Scholar ( https://scholar.google.com/ ).

From my own (non-medical professional) journey with PC + recurrence, and surveying the landscape on various forums, "symptom" is perhaps not the best thing to look for because symptoms occur so late in the progression of disease. With bile duct blockage and the resulting jaundice being a first symptom of PC for many people, a patient with stents or Whipple surgery may not experience jaundice, and thus not detect a recurrence until other more insidious symptoms emerge at later stages of the disease.

Anyone who has already had pancreatic cancer and surgery to resect it should know something about their CA19-9 history (levels when they were health vs sick, or if their tumors even expressed CA19-9 at all). CA19-9 seems to be the most affordable and easily accessible way to monitor yourself over time. Increases in CA19-9 seem to be the first indication of recurrence for a lot of people (myself included).

If your tumors don't express CA19-9, there may be other affordable blood biomarkers like CEA that could be indicative. Any patient's own history should identify whether that is the case. Other ctDNA/cfDNA tests like Signatera and Galleri can also be used, but are not so affordable, and maybe not as indicative early on as CA19-9 (again, exactly my case).

Jump to this post