← Return to CEA and CA19-9 Results as Predictors of Treatment Outcome

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@markymarkfl

We haven't tracked CEA numbers with my cancer (only CA19-9), but your CA19-9 numbers are encouraging with some caveats.

One caveat is that you and your tumors might not express CA19-9 as "loudly" as others. Your pre-surgery 53 sounds pretty low for a pT2N2 tumor, unless that was after neoadjuvant chemo. And your post-op numbers make me jealous! But keep in mind that different labs and their tests have different sensitivities, so you can't necessarily compare one lab's results against another's, or especially another person's from another lab.

On the other hand, if you're tracking CA19-9 regularly, and it starts to rise, it will be obvious in your case. That doesn't necessarily mean it will, or that an increase means cancer. With smaller numbers, jumps one direction or the other may appear alarming percentage-wise when maybe they shouldn't.

Long story short: I don't have any data or experience to say whether the CA19-9 and CEA levels are predictive of final outcome or not. But I would be concerned about the "large vessel invasion and 6 positive lymph nodes."

In my case, Whipple pathology said the pancreas head margin and 22 of 22 lymph nodes were clean, yet we confirmed a recurrence 3.5 months later at the pancreas head. Even a biopsy and two DNA-based tests missed the recurrence until another MRI, DNA test (Signatera), and rising CA19-9 confirmed it.

This is not intended to be a "downer" post, but somewhat of a "lessons learned" post. I was starting to celebrate all the NED indicators just a few weeks before getting the bad news, but that was not my big issue.

It is good that you are continuing to get chemo after your surgery.

What I would do in your position is:

1) See if they are also able to submit your current blood and post-op tissue for DNA testing with Signatera or a similar test

2) See if they can continue tracking your CEA and CA19-9 at least every month, more often if possible, for the next several months. They're not expensive tests, and the more data you have, the easier it is to see trends and know what YOUR "normal" is.

3) Make sure they're continuing to do frequent scans (2-3 months max) during the first year. My recurrence went from invisible on MRI to 2.2cm in two months, and likely metastasized in the 6 weeks we waited (with no treatment) to do a follow-up MRI.

4) Make sure you've had the genetic tests to identify germline and somatic mutations, so you have a better idea of what actionable, targeted treatment may be appropriate.

5) Start exploring the possible clinical trials and treatment centers you might have to use in case there is a recurrence. It can take a long time to find an appropriate study and/or get into another institution for treatment, and having your options mapped out ahead of time may help you avoid some delays.

Wishing you the best, but also success in preparing a backup plan!

Cheers,

mm

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Replies to "We haven't tracked CEA numbers with my cancer (only CA19-9), but your CA19-9 numbers are encouraging..."

I’m wondering if you did Chemo after your Whipple surgery? My husband also had 22 clean lymph nodes and had Whipple for stage 1B in February and currently finished 7 of 12 rounds of Chemo. I doubt if we will ever be able to stop worrying. Thank you for all your helpful information. God bless you.