Spot on tail of pancreas: Going to Mayo for second opinion

Are you getting any more imaging done on or before your 9/21 visit to Mayo?

My understanding is that Mayo prefers MRI for looking at pancreas (abdomen in general?) and CT for chest.

If your husband's pancreas CT is considered "old" (> 2 months) by 9/21, maybe they could schedule you for a "fresh" MRI to have ready in time for your meeting with the new Mayo doctor. They need at least 4 business hours for Radiology to read the imaging and write a report beforehand unless they request "stat" priority, so if they can get you an MRI appointment 9/20 or early 9/21, that would provide one more piece of info for this appointment that you won't have to wait until later for.

I'm a big proponent of doing things in parallel and getting stuff done quickly rather than dragging it all out over multiple appointments.

For the pancreas, I hope you have already had blood tests for CA19-9 and CEA cancer markers, and a genetic/DNA test for inherited (germline) mutations and for environmentally-caused (somatic) mutations. The ATM mutation (which I have) is a common factor for increased risk of melanoma and pancreatic cancer (which I have), so your husband might have some kind of related link between the two. Tests from "Invitae" and "Guardant" are examples of the germline and somatic DNA tests, respectively.

You may have hear the term "tumor agnostic treatment" in which systemic treatment targets the genetic mutations driving a cancer, rather than the "type" of cancer (organ it actually originated or exists in). The DNA tests are important for making this plan.

It's a bit close to your 9/21 appointment for the DNA tests, which require a few weeks to process, but maybe they can send you to their lab and have them drawn on the same day. If you can request this in advance, they could also draw blood the same day (2-3 hours in advance) and have results for CA19-9 & CEA at the appointment.

I assume you'll be seeing a pancreas specialist on 9/21, who might not have much interest in melanoma, but if the pancreatic spot is a tumor, you'll need to know whether it is a primary pancreas tumor or a metastatic spread of melanoma to the pancreas. A biopsy of the pancreas is one way to tell. If Mayo hasn't already requested pathology slides from earlier melanoma excisions, you should ask if they want those ahead of time for analysis now and possible comparison against tissue from a pancreas biopsy later.

If enough tissue was saved from earlier melanoma excisions, and the specimen remains viable enough for the purpose, it might be possible to generate a very specific blood test (called Signatera) which checks your blood for the exact matches of DNA molecules secreted by the melanoma tumors that were removed. If those are found floating around, it would indicate more melanoma somewhere in the body, and might suggest the pancreas tumor is actually melanoma. It is definitely possible for a pancreas biopsy to report a false negative (like mine did) for malignant cancer, either from inability to obtain malignant tissue, or from imperfect pathological analysis of the tissue, so deep digging and multiple tests that can support each other are good to do.

How long has it been since the last melanoma was confirmed NED? If they're still in a mode of monitoring for it via CT, how much of the body are they scanning? Maybe it's a good time for a full-body PET scan to see if there are mets anywhere else. They typically don't do this unless there is evidence of cancer in at least one place, but maybe you can request one soon in case any of the tests (including CA19-9, CEA, DNA, MRI/CT, biopsy) even remotely hint at a possible cancer. The Galleri test from Grail is another DNA test you could do (self-pay required, approx $1000). It's not perfect, but could one more data point supporting or clarifying the other tests.

It's good to know everything that's going on as soon as possible so you can plan the next step(s) as soon as possible.

Wishing you both the best!

Your decision to take your husband to Mayo is the best decision of your life.

Namaste

Agree with getting to an excellent center of excellence. If the genetic testing isn't done ahead of time, you will have the optimal testing directed by Mayo, but does seem like getting an MRI ahead of your visit is worthwhile. I have the BRCA gene, my sister also and she had a melanoma and now being treated for esophageal cancer. I have had breast and ovarian cancers related to BRCA, now pancreatic.
The CA19-9 and CEA are quick and easy to get done and can be done at any commercial lab. Worthwhile to know about the genetic aspects even if nothing is done ahead of time, you will understand what the doctors are talking about when you see them. It can go by pretty quickly in an office visit.
If you haven't done any reading yet, here are a few links

This article discusses pancreatic cancer and it's precursors
https://lustgarten.org/living-with-pancreatic-cancer/understanding/what-is-pancreatic-cancer/#whatis-causes

Scientific article about genetic syndromes associated with melanoma
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8397216/

Please let us know what you learn from your referral. We will learn a lot from it

Not all machines are the same; Mayo told me not to get scans done anywhere else. Let Mayo order what they need; get flexible flights. Plan to stay a week or be flexible for more testing/time.

We just live an hour away so can easily drive back and forth.

If Mayo takes your insurance and you live close like that - go there. Don’t mess around with anyone else. Tell Mayo they are your primary. They will test and confirm everything.

@mikalleb, how are you and your husband doing?

UPDATE ON MAYO VISIT FROM 9-21-23
Husband met with dr at the gastro section at mayo for spot on tail of pancreas. Dr confirmed first opinion that it is a watch and see situation. Will be going back for an MRI in November. Apparently there are a number of people who have spots/cysts that turn into nothing. So for now, just staying status quo. However, we are not disappointed in the diagnosis! Plus, this dr explained everything in detail, so we understood it better.

Interesting note: He has to wait 2 months for MRI as they don't have enough staff, otherwise we would have gotten it that day.

@mikalleb , Is anyone testing your CA19-9 and/or CEA levels? Did anyone order a germline (hereditary) DNA test such as Invitae?

If you could get CA19-9 + CEA now and in 1 then 2 months, you would have the beginning of a trendline and baseline knowledge of your normal values, all ready to re-assess coincident with your MRI. Multiple sources of info to help validate or invalidate the others.

Knowledge of germline mutations may identify that you're in a high-risk category, which might qualify you for higher priority, more advanced, more frequent monitoring. A mutation, plus my being an immediate blood relative with PC, has gotten my brother into a much more aggressive monitoring program.

If $1000 out of pocket is affordable, you might consider self-ordering the Galleri test from Grail, despite all the caveats associated with it.

It would be hard for me to sit back for two months with no testing, treatment, or data gathering going on. We knew from genetic testing and prior surgery that I was at increased risk, but two delayed actions in my journey definitely sent me down the less desirable road. I don't mean to worry you, but I'm worried for you!

I must agree. It’s hard to believe that at Mayo, of all places, would have a two month wait for an MRI.

Developing a baseline is very important. Additionally, have you had a full AB scan? “Surprises”months later are not fun.