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

The situation can get weird with imaging. I've read that some insurers won't pay for imaging at in-patient hospitals unless it's an emergency or you're actually an admitted patient. With high hospital markups, they can be done cheaper at outpatient imaging centers -- not ideal for cancer patients.

Aside from possibly protecting some income, there may be a bit of ego or personal preference involved. I had one institution (a center of excellence) report that they couldn't glean much from another CoE's MRI because of the "poor quality OSI" (Outside Imaging).

There are tradeoffs in everything, but I've found when a scan needs to get reviewed by multiple doctors, or questions sent to the radiologist who wrote the original report, it all goes a lot smoother when they're part of the same institution.

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.

@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!

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, how are you and your husband doing?

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.

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

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.

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/
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

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

Namaste