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Giving hope: 5 year celebration pancreatic cancer-free
Pancreatic Cancer | Last Active: Aug 10, 2023 | Replies (41)Comment receiving replies
@gamaryanne , my first and most obvious recurrence was at the surgical site. Specifically, at the "anastomosis" where they tied the remaining pancreas into my jejunum. I think that's one of two anastomoses the surgeon had to make while reconnecting the plumbing. It went from invisible on MRI a month after Whipple to 2 cm 3.5 months later.
Pathology indicated clean margins there during the surgery, but the surgeon also confesses those intraoperative pathology analyses are not perfect. Still, we don't know if there were simply some cancerous cells missed at the time, or if all was truly clean then but the rest of my pancreas was just on track to turn cancerous shortly afterward. Second opinions on the pathology samples also failed to find malignant cells.
By the time we confirmed the recurrence, there were mets present in other areas of the abdomen. I forget which came first, but the peritoneal wall was second if not first. Now have more "spots to keep an eye on" on liver, spine, stomach from MRI 3 weeks ago. Two oncologists are still calling this "stable disease" with my CA19-9 decreasing (99 two weeks ago, down from 677 at start of chemo) and Signatera back to negative (0.00) for the second test in a row. Thankful for those!!! But my highest Signatera score yet was only 0.14 (before chemo started), and we know Signatera is not as sensitive for PC as we'd like.
Replies to "@gamaryanne , my first and most obvious recurrence was at the surgical site. Specifically, at the..."
Thank you for this. It underscores my instinct not to just “wait” and have a few quarterly surveillance reports from scans and blood tests. I know someone that has been on Keytruda for 11 months with no reoccurrence and has Lynch syndrome Prior to Keytruda she 3-4 surgeries removing tumors and reorganizing plumbing.
Hi there- may I ask how long you’ve been managing your recurrence?
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Those two scenarios (insufficient margin despite pathology saying clean, and the possibility of remnant pancreas turning malignant later) are two reasons I encourage people to ask their surgeon whether total pancreatectomy (pancreas removal) is a viable/recommended option to Whipple.
If your whole pancreas is gone, that's one place you'll definitely never develop cancer again!
And, if you're going to be on insulin and enzymes the rest of your life anyway, it seems preferable that it be a cancer-free life.
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Context for the above: 1) You are already on insulin; 2) You have mutations and/or family history that increase your risk of cancer/recurrence; 3) There is zero evidence of mets anywhere else .
Otherwise,
"TP was not recommended as routine treatment for patients with pancreatic cancer, especially those with pancreatic ductal adenocarcinoma (PDAC)"
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6511256/
"Enthusiasm for a total pancreatectomy (TP) has varied with time. Early interest in elective TP (el-TP) as a potential solution to the high rates of tumour recurrence after a partial pancreatectomy waned with a clearer understanding of the tumour biology of pancreatic adenocarcinoma." https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4402052/ citing 22-year old paper https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4402052/#b1
In the above context, given the high frequency of recurrence (even just in the original surgical bed), it seems a fair question to ask your surgeon in 2023. 🙂