Intraductal Papillary Mucinous Neoplasms (IPMN) with symptoms

Couple of thoughts. First, is the delay caused by waiting for results of the EUS-FNA? I would think you'd get those pathology reports by Friday or Monday 1/8, so maybe not, but it's worth asking. Second, does Mayo have a waiting list for appointments? If someone were to cancel their appointment, perhaps you could slide into their slot. Of course, the biopsy results need to be available first so the appointment is productive. I hope you feel better today!

Thank you. Mayo says no wait list but can call back. They told me to seek local care. So my GI referred me to another GI that does the EUS-FNA. Seems due to the holidays there are delays.

Yeah, holidays definitely complicate scheduling for sure. Sorry you're caught up in that. I'm curious about the "seek local care" recommendation. Does Mayo mean that they can't see you at all? Or just that you can't contact them until after 1/15 and then they'll find an appointment for you? The second option would be better than the first, but neither would be great. Are you near a center of excellence or another top-notch provider where you can get in more quickly? Personally, I wouldn't wait until Mayo opens up to pursue consult, complete diagnosis and (hopefully) start of treatment. I would be on the phone Tuesday trying to get follow-ups organized for after the EUS.

They will talk with me at a phone appt that was scheduled. I have looked into UCSF here in No CA. I have the names of two surgeons with Whipple high volume. They have not called me back with their coordinator process yet. I had my GI send over a referral on 12/27. So, hopefully they call back on Tuesday. All calls into their system goes to VM. I’ll speak with my EUS doctor to see if can expedite. Crossing fingers it’s benign for now. Ty!

I would ask the docs who are about to perform your EUS on Wednesday if they can extract enough tissue to send out for a full genetic workup, not just a diagnosis of malignant cells or not.

It can be helpful if there is enough tissue available for outside analysis, and maybe send slides to Mayo in advance of your consult with them.

I don't know if they can get enough tissue via FNA to also build the Signatera test for you. Signatera does a genetic analysis of your tumor tissue, and then builds a special blood test that looks for exactly the same DNA in your bloodstream later on during treatment. It can be a very helpful complement to imaging and CA19-9 monitoring.

It's also possible for the EUS to miss malignant tissue. When my tumor came back at the original (Whipple) surgery site, it was 1.3 cm already. The surgeon took four samples during EUS, and had two pathologists/surgeons examine them all. He was absolutely positive if cancer was there, he would have gotten a piece of it. They found no malignant cells and concluded it was a case of pancreatitis, but imaging, CA19-9, and Signatera 6 weeks later confirmed a true recurrence of PDAC.

Another surgeon told me the post-Whipple anatomy may have made the EUS access a bit more difficult. My suspicion is that since my tumor recurrence started on the outside of the "junction" (anastomosis) where they attached the remaining pancreas to my jejunum, and the endoscopy approached this from the inside, they just couldn't dig deep enough into the wall to find it.

So, even the EUS/FNA is not perfect. There are other tests (e.g., from Guardant) that can detect circulating tumor DNA at microscopic levels. You should inquire about having one of those, as well as a germline DNA test (like Invitae) for inherited mutations. Both of these take several weeks to get results, but you would have those in the pipeline, and the answers might help guide your treatment when (if) the time comes.

I don't know how to speed things up at the Mayo. I'm impressed you've even got a callback scheduled without a definitive diagnosis going in.

Wishing you all the best!

Thank you for this helpful info. I had asked my GI about genetic testing and he said to wait which was frustrating. My MRI said watchful waiting retest one year. ????
Did you get them ordered by your doctor or do them yourself? Are you having more surgery to address the new cyst? Do we have pancreatitis symptoms ongoing from here? I’m losing weight with the nonfat diet and enzymes. Stomach hurts about hour after eating if I include fat. I’m trying to get in to UCSF GI Surgery which is local for me. With holidays, the 24hour call back to schedule delayed.

@rabbit22 , you're very welcome.

Repeating the standard disclaimer that I HAVE ZERO MEDICAL TRAINING...

...Regarding the genetic testing in general (i.e., blood test for inherited or spontaneous mutations), the GI docs seem to push that off toward oncologists and genetic counselors for their specialized ability to explain results to the patient.

If you don't have an oncologist yet, you could ask the GI doc to refer you to a genetic counselor for the basic (inherited/germline) test, because that would help identify whether you are a high-risk patient or not. Certain mutations and/or close family members with similar cancers could put you into a category that justifies closer monitoring than the average patient.

FWIW, MD Anderson just updated their pancreatic cancer screening recommendations here:
https://www.mdanderson.org/content/dam/mdanderson/documents/for-physicians/algorithms/screening/screening-pancreatic-web-algorithm.pdf
On page 2 it shows their high-risk criteria and the list of mutations considered risk factors.

There is also set of Fukuoka Guidelines / Classifications for managing IPMNs. Last update I could find was 2017, discussed here:
https://www.sciencedirect.com/science/article/abs/pii/S1424390317305161?via%3Dihub
and with a nice flow chart here:
https://www.endoscopy-campus.com/en/classifications/impn-fukuoka-classification-guidelines/
Since you are getting an EUS soon, you will be at the big decision block "Are any of these features present?" and answers to that will probably guide your next stage of diagnosis/treatment. If the answer to that question is "No," and the EUS confirms the size reported on your MRI (1.2 cm), then I interpret that as moving you to the second box on the bottom row (CT or MRI every 6 months for 1 year, then once per year for 2 years, then every other year if no change).

But, recalling that you are exhibiting 3 out of the 4 symptoms where Anderson's chart says, "Proceed to diagnostic evaluation," don't let them short-change you on the diagnosis.

Two additional thoughts:

1) The EUS procedure itself can aggravate your pancreas and cause pancreatitis, which could elevate your CA19-9 level. Have you already had that tested? It's good to know your own baselines in order to track changes. But it would be ideal if they could test it again before your procedure so it's not artificially induced to a higher level.

2) As I mentioned before, my EUS biopsy did not find malignant cells. A question I wish I had asked my GI surgeon was whether the tissue looked "normal" rather than just whether malignant cells were present or not. Although he diagnosed pancreatitis, I had never had any symptoms of pancreatitis before or after my Whipple surgery. Pancreatic cancer cells (PDAC type at least) frequently wrap themselves up inside of a "stroma" which is a fairly dense envelope of other tissue (fibroblasts and pancreatic stellate cells that produce and deposit fibronectin and collagens). Presence of this tissue would seem to me to not be "normal" tissue for the biopsied organ; even if it doesn't show malignant cells, it might indicate the biopsy only dug part way through the envelope.

In my case, I still have the main tumor that recurred at the original surgical site, plus a couple mets spread out around the abdomen and peritoneum, so there's no practical surgery or radiation option. We're just (thankfully!) keeping it all under control with old-fashioned chemo for now.

Thanks for all the amazing info!

Markymarkfl
Thank you for sharing such helpful insight and guidance!
As an update, I did go get the baseline CA19-9 testing done and it was negligible. Then had my EUS done but no FNA was done as the doctor felt not worth the risk at this time. My symptoms somewhat have resolved (possibly from antibiotic rounds while sick) except my enzymes when tested by a fecal test were of mid range.
I was able to meet on an initial zoom call with a local pancreatic oncologist through UCSF. I was told best to monitor, put on surveillance and retest with MRI in six months (Jul 3).
I am scheduled at Mayo Rochester early April to meet with GI Pancreatic specialist with another CA19-9 test order while there. I already sent my tests over to them and they have been reviewed by Mayo radiologists as second opinions and documented for my visit. I’m concerned about the low pancreas enzymes and wondering why or how long this has been going on and where it might fit in with my IPMN cysts. The EUS stated I have more than one which I believe is common.

I thank you so much for all your detail and care here for us all as we try to best navigate through this surveillance process. Hopefully my next blood test and MRI scan shows things are stable. I’m thinking this doctor at Mayo may order the genetic testing as the oncologist here did not feel necessary. (?). I am trying to be super pro-active as my father had pancreatitis multiple times and his sister, my aunt, died from PC.

Thank you again for being there Markymarkfl. So much appreciate you!

@rabbit22 , You're very welcome. I'm glad to have helped in some way.

I'm not sure if you can communicate with your new doctor/staff at Mayo through their portal yet (if you haven't already had an appointment), but maybe you can just call them direct and ask a few more questions.

Genetic testing labs like Guardant and Tempus contract with outside phlebotomists and nurses who can come to your house with the test kit, do a quick blood draw, and send it to one of those labs for analysis.

Maybe you can find out if Mayo would like to order one of their tests and get that data in hand before your appointment. There's plenty of time to get that done between now and then, and it would be nice if you don't have to wait for another appointment after April to get it.

As a side note, if your next CA19-9 test is at Mayo, you might see a significantly different result, with that being a different lab. If you can get one or two more tests between now and April at the same lab that did your first one, that would give you a more consistent indicator of the average value or trend and direction.

I hope it's all good news for you!