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Pancreatic cancer relapse

Pancreatic Cancer | Last Active: Nov 1, 2023 | Replies (69)

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@markymarkfl

I'm not sure what the record is, but after 3.5 months of post-Whipple "NED" (No Evidence of Disease), I had a recurrence at the original surgical site. I am still going strong 9 months after the diagnosis, with no ill effects from the cancer and only mild side effects (fatigue, neuropathy, mild nausea) from 6 months of chemo.

It's not exactly "long-term" yet, but I'm fairly stable and hopeful on the current treatment.

In your case, I hope the doctors are looking at more than just biopsy results.

In my case, the intraoperative pathology during Whipple reported margins were clean when apparently they were not. Then, 3.5 months later, after spotting a suspicious lesion on MRI at the original surgical site, post-Whipple anatomy made it difficult for a biopsy done as part of an EUS to obtain tissue, and as a result, I got a false negative which delayed treatment.

If your docs have actual lymph node tissue and proper time to examine it, you should get a very accurate read, but still the pathology is not perfect. I hope they are also able to test your blood for circulating tumor DNA with a test like Signatera to check for MRD (Minimal Residual Disease) which may yield a "microscopic" positive that indicates malignancy even if it's not found in biopsied tissue or seen on scans. If that is the case, you might want to begin treatment ASAP, probably with a systemic chemotherapy, but perhaps total surgical removal of everything if you find a reputable surgeon who thinks it's all resectable.

Another forum member here ( @stageivsurvivor ) had surgery almost immediately after diagnosis, and then mets were found shortly after surgery. He is now approaching 11 years since that time, and may have more insights to share. I'm just a newbie here. 🙂

Wishing you the best!

--mm

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Replies to "I'm not sure what the record is, but after 3.5 months of post-Whipple "NED" (No Evidence..."

My journey is a little different. I was diagnosed in September. Had chemotherapy and an unsuccessful whipple in Feb. I decided on high dose radiation and after five weeks of radiation two months later my scans showed no spread and all cancer markers normal. I don’t hear many people talking about radiation. It took much research and four different opinions to decide on my course of action. I would be willing to share if anyone is interested. Best of luck on the journey ahead.