What are the symptoms to look for for pancreatic recurrence?

CT scans only can see so much. My PET scan showed the recurrence of cancer in other areas of my abdomen. In chemo and CA19-9 has dropped to 80 from about 500. Another PETscan will be scheduled …..I am hopeful….

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@layla97 , I have taken the Signatera test every 2-3 months since my R0 Whipple 1.5 years ago.

Unfortunately, it was still saying negative when MRI showed a 1.3 cm tumor recurrence at the original site 4.5 months after surgery. I took the Grail/Galleri test at the same time and also got a false negative. My CA19-9 had gone from mid-200's pre-op to 12 one month post-op to 77 when the Signatera and Galleri said negative.

At my follow-up MRI 2 months later, the tumor was 2.0 cm, CA19-9 at 277, and Signatera finally went positive. I didn't redo Galleri because of the self-pay price. I contacted them and offered them my blood again if they'd redo the test for free just to help calibrate their equipment, but their only replies have been robot-generated emails asking me to write a testimonial they can use in advertisements about how their test changed my life. 🙁

My PA said the DNA-based tests are not super-sensitive when it comes to PDAC tumors, and "if the test is negative, you might have cancer; if it's positive, you definitely have cancer."

The DNA tests are improving over time, but are still just one camera looking at a crime scene from one angle. The Galleri test could be informative in your case, but no guarantees.

Please post back here with results if you do take it!

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Wow, sorry @markymarkfl -- just saw this! My GI doc recommended an MRI with and without contrast which came back clean. With all the controversy over the Grail/Galleri test and sensitivity/specificity issues I have decided to wait on getting this test performed. Fam hx yields a maternal grandmother who passed at 50 with PC, and a mom who passed at 56 from colon CA.
In the meanwhile my sister, who was diagnosed stage IV July 2023 has undergone 7 Folfirinox infusions with good results. Her CT has shown an undetectable tumor, originally at the head of the pancreas, and no evidence of mets. I know certain lesions are not seen with scans. Her CA19-9 was never really super high. It was 45 in July, now 20. She tells me her Onco at MSK spoke of possibly limited surgery down the line?????? She was jubilant when she asked him "how long" she has --- when he said, "Many, many years". Being in healthcare, I am cautious interpreting his reply.
Knowing individuality in response to treatment yields different results with similar diagnoses,
I am also jubilant (with caution) that she is responding well so far -- even though each treatment has her feeling so awful for over a week afterwards only to repeat again, and again, ad nauseam (no pun intended).
I am hoping she will be well enough to travel at some point since we are on separate coasts and I have been flying in to NYC numerous times since her diagnosis. I will continue to travel to see my only sibling and hope one day she can enjoy some chemo-free time with me.
Thank you for your considerate and intelligent posts on this thread. I always look forward to reading your posts.

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Don’t trust a CT scan. Mine were fine, but my CA-19 kept creeping up, and since I still have fluid in my abdomen from surgery in April, the Dr thought it was from that. Now my CA-19 is 1000. Going for PET scan this week and biopsy next! I was stage 1 after surgery, so this is a blow. Just don’t trust CT scans

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Jilly
How did you PET and biopsy turn out?
Hugs.

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Looking for a little help.

I just and my first 6 month CT check-up scan and it shows:
"New sclerotic focus of the T4 vertebral body measuring 1.1 cm, suspicious for sclerotic metastasis"

The doctor has ordered an MRI (3-week wait) to see if they can get a definitive answer.

Has anyone seen pancreatic cancer go to your sine as the first indicator of spread? thank you.

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Metastasis. 6 in peritoneum, 2 in liver. Started Keytruda last week.

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