Giving hope: 5 year celebration pancreatic cancer-free
Thanks so much to Dr. Nagorney and Michelle Williamson and all the other doctors involved for me to be celebrating 5 years cancer free from pancreatic cancer! It's great to be alive!! Thanks again! ♥️
Interested in more discussions like this? Go to the Pancreatic Cancer Support Group.
@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.
@markymark911
This was so helpful. Where did your cancer reoccur?
Was it a metastasis elsewhere or in your pancreas bed where surgery was performed?
@patti303 , The Signatera ctDNA test was late detecting my PDAC recurrence, but eventually caught up with my MRI and confirmed the cancer was back.
One of my onco nurses told me the Signatera was not super-sensitive to certain solid tumors. Basically, if it detects cancer, you have cancer; if it doesn't detect cancer, you might still have cancer.
Nonetheless, I would rather do as much non-invasive testing as possible, and risk getting a false positive that requires follow-up than to remain uninformed when something *might* be there that you'll never find if you don't test.
Never let one test result be the sole basis of a treatment plan, unless it's near 100% unequivocal or you have no time for alternatives. Err on the side of caution! I had 3 different blood tests and a biopsy saying "no cancer" but an MRI saying there probably was. Follow-on bloodwork eventually caught up and confirmed the MRI was correct. The multiple false negatives gave me a false sense of "blissful ignorance" but no more so than if I had not been testing.
I can so relate to your post (I had a resected PDAC w/KRAS mutation). My 20-month scan showed NED and my oncologist thought it was a waste of time to try Natera's blood test for ctDNA or even continue with my monthly blood tests (CA19-9 doesn't work for me, but I want to keep an eye on glucose and other measurements). He did order a 24th month scan, but since I've been the one requesting scans every four or five months, I'm not clear if it was because I asked for it or he recommended it.
I also like the posts recommending follow-up DNA testing. Haven't done that yet, but I'll look into it.
Can't help but wonder if it's the individual doctor or the facility's approach to pancreatic cancer patients since our stats are so discouraging? When I look around the internet, I see a tremendous amount of testing and research in the works. To my eye, there are a lot of very smart people who are passionate about finding a cure for us along with the charitable contributions to help. I see plenty of evidence that it's worth self-advocacy and being proactive. The discouraging aspect is (for many of us) we are simply left to try and navigate a system we were never prepared for.
I am also learning that having a genetics consult more than once can be useful. Each year more genes are being added to the test. With cancers that continue to have some mystery about them, this seems useful. A friend with Lynch Syndrome gets hers done every two years by a specialists’ recommendation.
Second opinion at an expert center seems like a really great idea.
Absolutely must advocate for ourselves. I was pronounced NED and it feels like all doctors in my life have disappeared. I do have follow up appointments but I somewhat feel I am in a “wait and see” loop.
So I am trying to arrange consults with Mayo, MSK and John’s Hopkins. So far have appt at JH. I have a great surgeon but I need second opinions on how to be proactive now. My oncologist feels so nothing right now but surveillance. Just not aure I am comfortable with this…
I can’t stress enough the importance of self-advocacy. It requires reading and asking questions to be able to make informed decisions and taking an active role in being part of one’s care team.
Thank you for sharing your story. I am five weeks out from my Whipple. I love the methodical approach that you took to your treatment. This gives us all hope.
Definitely seems to be a familial pattern. Not all cancer genes have yet been characterized. Did you see a genetics counselor? I am not sure if there is a research institution doing research on cancer genetics that is working on this issue but it just has got to be out there somewhere. My daughter is at risk for BRCA, finally agreed to genetic testing. It will be done as a virtual visit at MSKCC. This is standard screening.