What are the symptoms to look for for pancreatic recurrence?

I did the post surgery chemo as added assurance in addressing any lingering cancer that might still be in my system. I was also stage 1b with zero impacted lymph nodes.

How was your chemo? Did you have any serious side effects?

I had 6 rounds of 5FU and didn’t have much negative reaction from it. I was blessed in that regard. I was initially worried that the chemo post surgery would be rough since I lost 50lbs after the surgery and my body was weak and compromised.

I know exactly how you and your husband feel. My doctor calls it “scanaxiety”. It’s normal but so hard.

I have a Cyst they initially found with a CT when they were looking for a hernia. That was June of 2022. Since then they have been monitoring with followup MRIs at either Jax or Rochester Mayo every 6 months. I also has a EUS in which they didn’t take a biopsy (said it was too close to a vein). My CA-19 levels have been 15|16.

I have my next January 10th @ Jax Mayo.

Meanwhile if you have a strong, faith life, let me share with you what my priest told me. He said to surrender everything to God and he will take care of it no matter what situation is. So as hard as it is, I am putting my trust in Gods will.

@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!

@vcrkv2024 , After 12 rounds of neoadjuvant Folfirinox on a Stage-2 PDAC in the head of my pancreas, my R0 Whipple was also clean in 22/22 lymph nodes tested.

I figured along with the lower post-op CA19-9, 2 negative Signateras and a negative Galleri, and my oncology team's agreement that no adjuvant therapy was necessary, I was NED enough to go along with that. Who wants chemo when you're NED?

Well, within 4.5 months of the Whipple, I was ED (MRI showed tumor at 1.3 cm), and by the time follow-up MRI and other tests confirmed it 7 weeks later, I was Stage-4.

Everything I've read since then suggests if you can stand adjuvant treatment after surgery, you should probably do it.

Given the number of recurrences that happen at the original surgical site, and my ATM mutation making recurrence more likely, I would have opted to have the entire pancreas removed in the first place instead of just a Whipple.

There are some smart people addressing it in the paper in the context of IPMNs:
https://karger.com/dsu/article/33/4/335/117924/Is-It-Time-to-Expand-the-Role-of-Total

I agree with your priest. My 8 yr old granddaughter made me an inspirational card that I’ve hung in my office. It reads
“Good morning Papa, this is God. I will be handling all of your problems today. I will not need your help!” That message has gotten me through a Whipple surgery, 6 rounds of post surgery chemo, and many days and nights of very challenging recovery.

Thank you . Ca19-9 dropped drastically but is still higher than normal range. That is great news! Now just waiting for Ct results. Will be speaking with oncologist in early January.

Thank you for your insight. He has his follow up testing on Jan 5th, and meet with Oncologist on the 8th. Will keep positive thoughts for you as well next month. Wishing only good things in the New Year for you and all dealing with this.

Spleen and half pancreas removed. The spots are in my abdomen and 2 on liver. Keeping my fingers crossed