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tls (@tls)

Should the cysts be looked at sooner

Pancreatic Cancer | Last Active: Jun 17, 2021 | Replies (15)

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Hello again @tls,

Given the added information about your cancer history and your current symptoms, I can certainly understand your concerns better now. You were told, "nothing looks different to me." Was that in response to this CT and your concerns about the pancreas? Here is a little information about IPMN from Mayo Clinic's website, which may be helpful to you, https://www.mayoclinic.org/medical-professionals/digestive-diseases/news/more-data-needed-to-guide-pancreatic-cyst-management/mac-20430487

I also have had 3 surgeries of the upper digestive tract for a rare form of cancer, carcinoid cancer. I also have IPMN so I understand how worry can take a toll on you. In the several years that I've known about the IPMN, I have had one EUS and numerous follow-up MRIs (an MRI is a better way to view pancreatic cysts) and in the years when I don't have an MRI, I have blood tests to check the functioning of the pancreas. It is important, as you know, to be your own advocate.

No one can say what is a "normal" follow-up time, but it is very important to be your own advocate for health care. You mention living in Florida. Are you aware that there is a Mayo Clinic in Jacksonville, FL? If you feel that your concerns are not being addressed in a prompt matter, you might consider a consultation at Mayo. Here is information regarding scheduling an appointment. https://www.mayoclinic.org/appointments?

In the meantime, I see that you have some follow-up appointments on the 5th and then a new appointment on the 12th. Please bring a list of your questions and concerns to these appointments.

Given your many symptoms and your health history, I would encourage you to find a medical team that will be responsive to your concerns. I look forward to hearing from you again. Will you keep in touch and post again regarding your progress?

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Replies to "Hello again @tls, Given the added information about your cancer history and your current symptoms, I..."

He was referring to a regular CT with contrast that they did in my hometown ER to the special protocol CT w/contrast at their center about 10 days before. My blood work showed slightly low red blood count, lowered Total Proteins and Anion Gap.

I am aware of Mayo Jacksonville. I grew up with Mayo MN as THE place of experts. Is the Jacksonville team of the same caliber?

Back to the timing, when they first found your IPMNs did they move quick to lock at with MRI or was it a wait? Also, who is the main specialist that oversees your pancreas care: gastro, endro or some other specialty?

Thank you for your input