Pancreatic cyst

I'm looking for help in how to think about my situation. I have not discussed it with anyone except my spouse and my doctor because I don't want to worry family and friends needlessly. I have no symptoms. A routine 6-month checkup showed normal blood test results and normal urinalysis except for several additional red blood cells so my dr. sent me to a urologist. His urinalysis was normal but he sent me for a CT scan which showed a PD dilation of about 5mm. and a pancreatic head cyst of about 2.7 cm. A local oncological surgeon who does a lot of Whipples sent me for an MRI and an EUS. A biopsy was negative. Raised amylase is consistent with IPMN. Samples from the EUS were sent to PancraGEN to test pancreatic head cyst fluid which concluded there is a "statistically higher risk," recommending "close followup as further progression may not occur." Sounds like they are hedging their bets! I also saw an oncological surgeon at a famous cancer hospital. The only difference in the two surgeons' recommendations: the former recommended an MRI in 6 months (June) and the latter made an appt for an MRI in 3 months (March).
If either the PD or the cyst is larger at the next MRI, I think both surgeons will recommend a Whipple before cancer develops. Here's what I think about:- I am 79 years old. I am well. I am energetic. Were it not for Covid, I would be living a normal, active life. I think I would rather live my life and take my chances of a pancreatic cancer death sentence, than give up months and and probably much more to a Whipple recovery. I would think differently if I were 59 or 69. (The surgeons have told me they have lots of old patients!) Anybody have an opinion about what I should be doing or thinking?
Easier question: Should I make an appointment at the Cyst Clinic at Johns Hopkins, which would not be inconvenient for me? (Odd to be asking that on a Mayo website I guess.) Or are two opinions that don't really differ sufficient? Or could I be useful at JH where they seem to do a lot of PC research?

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Hi @vickyb

You mentioned in your last post that you would be having an US endoscopy on January 20. I hope all went well with that procedure.

How are you feeling? Did you find out the results and if the cyst is releasing the enzyme?

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I failed to include the dr. wants the scan done b/o the VIP being 90% and the diarrhea being so consistent. Again thank you for your concern and will keep you posted.

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Hello @judithsh and welcome to Mayo Clinic Connect. You pose a very thoughtful question and I see that many members have responded to you based on their experiences. After reading their thoughts, how are you feeling about the choices they have made?

I noticed that while you mentioned not taking any action on this health issue, you ended your post by considering a consultation at JH. Do you think that a consultation at JH will provide you with the information you need to make an informed decision?

I have had IPMN for several years with periodic follow-ups. I have not had much change so I just keep up with the MRIs as needed.

I would hope that you continue sharing about this on Connect. Writing about these decisions is a good way to clarify the issues.

Will you continue posting?

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Thank you, Teresa, and all responders for your kind interest and help. If I have no change in the duct or the IPMN at my next MRI, I will be satisfied with "watching and waiting." Generally, I'm a planner, so I'm thinking about what to do if there is change, but a biopsy is still negative. That's when my age is relevant (to me). The two doctors I've seen are (Whipple) surgeons. Although they both have "teams," I'm considering going to the JH Pancreatic Cyst Clinic because its emphasis on a multidisciplinary approach and research may result in some different ideas. If not, I will have had three of the best available opinions, and that's the most that I can do. If my experience is useful to anyone, I'm happy to continue to post.

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@judithsh

You are wise to be seeking out the best care for yourself. Yes, I would appreciate it if you would continue to post. I would be interested in knowing what JH has to say. If you are comfortable doing so, please let me know how that consult goes.

If I can invite you to conversations about pancreatic cysts that would also be great. People who come to Connect are helped when they talk to others experienced with their own health problems.

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My experience with JH to date: The Pancreatic Cyst Clinic won't make an appt until its drs have seen a patient's medical records. All my medical records are online, but the Clinic won't access them by email (using a password generated by the forwarding institution). So I sent a disc and all reports by USPS overnight priority express mail with a return receipt request to the address given to me over the phone, the one that appears on the web site. I got the signed return receipt back, but heard nothing for 9 days so I called in the early morning. The Clinic did not have the records. The person on the phone was going to look for them, but did not have them by the end of the day. She suggested that I send them again to a satellite medical facility at a different address, and said she would pick them up herself. My impression so far: JH doesn't know what it's doing!

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My experience with JH to date: The Pancreatic Cyst Clinic won't make an appt until its drs have seen a patient's medical records. All my medical records are online, but the Clinic won't access them by email (using a password generated by the forwarding institution). So I sent a disc and all reports by USPS overnight priority express mail with a return receipt request to the address given to me over the phone, the one that appears on the web site. I got the signed return receipt back, but heard nothing for 9 days so I called in the early morning. The Clinic did not have the records. The person on the phone was going to look for them, but did not have them by the end of the day. She suggested that I send them again to a satellite medical facility at a different address, and said she would pick them up herself. My impression so far: JH doesn't know what it's doing!

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@judithsh, did things get staightened out? What are your next steps regarding your cyst?

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