NED (no evidence of disease) and back to terrified again: Anyone else?

Posted by howleegirl @howleegirl, Jun 10 2:50pm

My husband's last CT scan was NED. We were soooooooo happy. Just had a PET scan done and a very small nodule and some lymph nodes are very suspicious that the cancer has returned. It is still contained in the surgical bed of the pancreas after the Whipple procedure. (Whipple done 12/22. Six 6 months of chemo after that). Docs are deciding whether to operate or do radiation/chemo. Back to being terrified again.........Has anyone else gone through this?

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markymarkfl | @markymarkfl | Jun 10 3:31pm

I was NED (per MRI 1 month post-Whipple, and per 2 Signatera tests and 1 Galleri test) in the 4.5 months after Whipple. Only sign (which we weren't tracking closely) was that my CA19-9 was creeping back up.

New MRI 4.5 months post-Whipple showed new 1.3 cm mass in the surgical bed, and CA19-9 was 77. EUS biopsy came out negative, so docs recommended waiting 6 more weeks (no treatment) with repeat MRI. By then, CA19-9 was 277, Signatera was positive, and the mass was 2 cm by then. There was no other evidence of spread at the time, but surgeon still wanted 3 months of chemo with no signs of progression before going in again. A subsequent CT and re-review of the last MRI revealed I was actually already Stage-4 at the time, so was all systemic treatment (chemo) for me.

I'm doing fine (18 months post-discovery), but it's unfortunate that closer monitoring and earlier treatment might have addressed it with a second surgery before it spread.