Pancreatic cancer relapse

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

Thank you so much for you informative response. I had not even heard of the tests that you recommended.
Its encouraging to hear your story, and the short story of the 11 year survivor. I was a wreck yesterday after seeing the doctor, but am feeling more hopeful today! Thank you again for you kind thoughtfulness. Keep up the great success!

Hi @lilliejane2, I'd like to add my welcome too. I think @krfinlayson might have some experiences to share with you too. See her post and ensuing discussion here:
- What to expect from Gemcitibine chemo/radiation? https://connect.mayoclinic.org/discussion/what-to-expect-from-gemcitibine-chemoradiation/

Have you had the biopsies done already and are waiting the results?

@lilliejane2 , you're very welcome.

I'm not sure what certain oncologists tell their patients or what they test for over time, and thus not sure what patients may actually know or not know.

For the benefit of anyone starting at Square One and reading this post, this is my attempt to summarize the non-invasive tests people should know about. DISCLAIMER: I AM NOT A DOCTOR! Below is just my interpretation from the experience of several patients, and I hope it helps someone.

1) RISK OF CANCER by germline (hereditary) mutations: These are genetic defects you inherited from your parent(s). Some are known to be associated with higher risk of pancreatic cancer. A DNA-based test such as one from "Invitae" can detect numerous hereditary mutations. Knowledge of these may help guide your treatment.

2) PRESENCE OF CANCER and MUTATIONS:

2a) Simple, traditional biomarkers CEA and CA19-9 can be tested at very low cost. Not all patients secrete either with cancer, and some people secrete more than average amounts of both even without cancer. Non-cancerous conditions can also cause temporary elevations of both. It helps if you are tested often enough to know what your "normal" values are so you can easily spot deviations and trends above normal.

An abnormal result in any test does not necessarily indicate presence or absence of cancer, but suggests a possible follow-up with a different method to confirm or dismiss a problem.

2b) DNA-based biomarkers. These look for DNA evidence (cfDNA: cell-free DNA, or ctDNA: circulating tumor DNA) of cancer in your blood. The Galleri multi-cancer panel test from Grail is one example that looks for multiple types of cancer DNA. It is not FDA approved for treatment, but does have approval as a lab-developed test that may provide useful information. The Guardant test can identify tumor DNA with "somatic" mutations (caused by environment, not by your parents). These are particularly useful in helping find appropriate clinical trials and planning other treatment. Signatera is a test that is fine-tuned for future use. When your tumor is first removed or biopsied, Natera builds a special test that looks for exactly the same DNA as what's in your tumor. Later Signatera blood tests can detect the presence of microscopic amounts of DNA.

The advertising claims for Galleri and Signatera is that they can "sometimes" detect disease before conventional imaging can. In my case, both failed to do so, with MRI and CA19-9 providing the first evidence of recurrence. My oncology PA said if Signatera is positive, your cancer is definitely back; if Signatera is negative, your cancer still might be back. Monitoring CA19-9 and Signatera (or similar) are probably the most common tests to monitor treatment progress or recurrence.

Of course, in patients who have never knowingly had pancreatic cancer, elevated liver enzymes and bilirubins might be early indicators of cancer. In my case, they were signs of my bile duct being blocked by the pancreas tumor. But they presented themselves in a simple blood test weeks before I started seeing urine/stool changes and a few months before the jaundice and itching became apparent.

Some doctors don't see much value in screening for pancreatic cancer in general, and some don't recognize high-risk patients. You might be known as a high risk if you have blood relatives with PC, but if you only have a hereditary gene mutation, you're in a Catch-22: They don't test you because they don't know you're high risk, and you're at risk because they didn't test you and identify the mutation.

Others don't like to do the testing because of the "noise" or lack of sensitivity and specificity, especially with CA19-9. My position is that the more often you test it, the more data you have to establish your normals and see a cleaner trend, so it will be more obvious and higher confidence when a result deviates from normal.

lilliejane,

Not a doctor or medical professional, but perhaps while you work to determine next big steps, push to restart chemo? Every day of delay could count.

I can't speak to the survival stats for patients with a pan can relapse, but I wanted to mention something that @markymarkfl posted: "I'm not sure what certain oncologists tell their patients or what they test for over time, and thus not sure what patients may actually know or not know." In my 3 months of dealing with this diagnosis, which has included heaps of MD appointments, reading online, participating in this Mayo patient board, I've decided that MDs vary greatly in their approach to pan can. I read all the time on this board about patients being offered various surgical procedures, for example, or blood tests or chemo treatments when my own MDs have said nothing about them. Pan can is a notoriously elusive disease, and I think MDs must work very hard to keep up with advances and literature, and then there's always the factor of personal opinions and judgments based on that knowledge and their personal experience with patients.

My point is this: Do your research, make a list of questions, and push your MDs to provide more info and answers. If you can't get the info you're seeking, look for a second or third opinion. In my case, I wound up switching oncologists because the first one wouldn't answer questions; the second one appears, so far, to be much more helpful and amenable to answering questions and talking about options. Meanwhile, don't delay treatment. Once it gets a toehold, pan can is difficult to knock out or control. All the best to you as you navigate this challenge!

All well said. I might add only one additional nugget. Doctors rely on “standards of care” and there are 2 “gold” standards for this disease. Many oncologists are treating a myriad of cancers so you must be your own advocate as often the standard of care may not be enough and may be too late. Read, ask questions, and have a goal to formulate a back up plan if your genes or mutations provide for such!

Thank you, everyone, for your thoughtful responses! Absolutely true..you have to be your own advocate. After I was finished with chemo last August, i changed oncologists also. The old one resented it if i had an opinion. I love my new oncologist. He is so much more helpful and human, with a wonderful sense of humor. Today i had an MRI to enhance previous CT concern. I was happy to see that one area of concern that they called a suspicious soft tissue "mass" did not even show up on the MRI.
Again, thank you all for all of your knowledge and shared stories of courage!

Care does seem to vary widely. It seems as if everyone with pancreatic cancer should have a referral to a pancreatic center of excellence for a review of treatment at the least. Pancreatic cancer is not a common cancer and I think the average oncologist is not really up on all of the ins and outs of it. I have BRCA gene and my own local oncologist wasn't familiar with the latest on treatment, but I have easy access to my second opinion at MKSCC. So far, they have been working together.

Going back to the initial post, there are a number of patients that developed metastatic disease and after treatment of chemo and in some situations ablation or liver wedge resection, are now long-term survivors. The story of Steven Lewis is one such example-
https://seenamagowitzfoundation.org/steven-lewis-long-term-pancreatic-cancer-survivor-story/
There are stories and videos of others in the survivor archive at LetsWinPC.org. Other sites that feature patient survivor stories are at Pancreatic.org and PanCan,org which also has a patient mentoring program made up of volunteers around the country. They will match you up to a survivor having the same diagnosis and living in the same State or geographic region when possible.