Getting a second opinion: Thoughts on this approach?

Posted by fionac @fionac, Aug 19, 2023

Hi All,
I have what may a side branch IPMN. Yes, my initial reports says "may" be.
I do not live close to a pancreatic center of excellence. I do live one hour from a university medical center, and about hour half from Dartmouth, which I have learned is only a center of excellence for pancreatitis. The closest center of excellence is 3-4 hours.
I know many of you recommend going to a center of excellence.
I was wondering, given that I would be traveling 3-4 hours to do that, if maybe seeing the university medical center closest to me first, and then doing something like this below for a second opinion from a center of excellence - so in this case, Yale. It looks like Yale offers a virtual second opinion where they get all medical records, images etc. and review them.

In my case, my biggest concern is that the initial diagnosis of IPMN is correct and that it is not something else. This is where I struggle the most with the university medical center and being concerned they may not have the radiological expertise to really know their cysts.

Wondering what you all think about this approach?

Interested in more discussions like this? Go to the Pancreatic Cancer Support Group.

Based on the complexities, the timelines for treatment, I would absolutely travel to a center of excellence for tests and diagnosis - then plan to relocate there, as needed, based on their assessment.

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@mayoconnectuser1

Based on the complexities, the timelines for treatment, I would absolutely travel to a center of excellence for tests and diagnosis - then plan to relocate there, as needed, based on their assessment.

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The issue is the initial diagnosis because if this is a side branch IPMN, I know that any center is just going to monitor it. It is 8mm and all the protocols seem to just be watch it. My concern is making sure the initial dx is well done. I think I will call Yale tomorrow and see if I can get someone to talk to me about how they would approach this because if they aren't going to do any specialized imaging, I can just send them my images for a second opinion. I can always transfer care I guess.

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@fionac

The issue is the initial diagnosis because if this is a side branch IPMN, I know that any center is just going to monitor it. It is 8mm and all the protocols seem to just be watch it. My concern is making sure the initial dx is well done. I think I will call Yale tomorrow and see if I can get someone to talk to me about how they would approach this because if they aren't going to do any specialized imaging, I can just send them my images for a second opinion. I can always transfer care I guess.

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Is Yale considered a COE?

IMO, if it is not, I would travel wherever necessary to be tested and diagnosed by teams at a pancreatic COE.

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@mayoconnectuser1

Is Yale considered a COE?

IMO, if it is not, I would travel wherever necessary to be tested and diagnosed by teams at a pancreatic COE.

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Yeah, they are on the NPF list

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@fionac, I noticed that you wished to post a URL with your post. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe.

Please allow me to post it for you:
Yale second opinion https://www.yalemedicine.org/patient-tools/second-opinion

Mayo Clinic also offers second opinions and the approach that you are inquiring about. Many people consult with Mayo Clinic for diagnosis confirmation and treatment plan, and may get some services locally. For example, consultation and surgery at Mayo Clinic, then chemotherapy administered locally or closer to home.

Read more here about the benefits of second opinions:
- Generally Speaking: Seeking Second Opinions https://connect.mayoclinic.org/blog/cancer-education-center/newsfeed-post/seeking-second-opinions/

To inquire about a second opinion at Mayo Clinic, start here: http://mayocl.in/1mtmR63

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@colleenyoung

@fionac, I noticed that you wished to post a URL with your post. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe.

Please allow me to post it for you:
Yale second opinion https://www.yalemedicine.org/patient-tools/second-opinion

Mayo Clinic also offers second opinions and the approach that you are inquiring about. Many people consult with Mayo Clinic for diagnosis confirmation and treatment plan, and may get some services locally. For example, consultation and surgery at Mayo Clinic, then chemotherapy administered locally or closer to home.

Read more here about the benefits of second opinions:
- Generally Speaking: Seeking Second Opinions https://connect.mayoclinic.org/blog/cancer-education-center/newsfeed-post/seeking-second-opinions/

To inquire about a second opinion at Mayo Clinic, start here: http://mayocl.in/1mtmR63

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Thank you Colleen. Will they do virtual second opinion?

My biggest concern is ensuring the proper diagnosis of the cyst to begin with. I would really like a center who sees a higher volume of these to look at my images to see if they concur with the cyst diagnosis. I also wonder if my local medical center has the same diagnostic capabilities of a larger center.

Thank you again. I appreciate your response.

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@fionac

Thank you Colleen. Will they do virtual second opinion?

My biggest concern is ensuring the proper diagnosis of the cyst to begin with. I would really like a center who sees a higher volume of these to look at my images to see if they concur with the cyst diagnosis. I also wonder if my local medical center has the same diagnostic capabilities of a larger center.

Thank you again. I appreciate your response.

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Fiona,
Mayo Clinic welcomes both new and existing patients for virtual and in-person care in adherence with federal and state executive orders and guidance.

Virtual care is available for out-of-state patients IF the provider you are seeing is licensed in the state where you live.

Video and phone visits also can be great options for appointments before, after or in place of face-to-face care. Appointment coordinators will recommend a virtual visit if it best fits your individual needs.

I would call and inquire.

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