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What are the symptoms to look for for pancreatic recurrence?
Pancreatic Cancer | Last Active: Jan 19 11:25am | Replies (43)Comment receiving replies
@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!
Replies to "@layla97 , I have taken the Signatera test every 2-3 months since my R0 Whipple 1.5..."
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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markymarkfl - May I ask what your CA19.9 level was immediately before your Whipple? I'm scheduled for a laparoscopic, modified Whipple on January 25. However, my last CA19.9 result had risen to 153 near the end of my radiation treatments in early December. (A month earlier I had a low of 43 following a high of about 650 in June.) Do you (or anyone else) know at what level CA19.9 would be before postponing surgery? I presume any postponement due to high and/or rising CA19.9 levels would require additional neo-adjuvant chemotherapy before rescheduling surgery. Thanks.