Pancreatic cyst

Once I got to JH, things went smoothly and pleasantly. I had a CT scan that, unfortunately, showed an increase in size of the cyst and duct compared to a CT 4 months earlier. The JH dr. explained that a negative biopsy during an EUS was not necessarily helpful b/c it doesn't tell anything about adjacent cells. We discussed an open Whipple procedure compared to a robotic or laparoscopic procedure. Pluses and minuses to each. I'll have to discuss with my local surgeon to decide which is right for me. We discussed having surgery at JH when I live hours away. If I didn't have a local world-class cancer hospital, I would certainly consider going to JH in spite of the distance. I'm scheduled for an MRI in less than 2 weeks. After that I think I'll be scheduling Whipple surgery. I didn't think I'd be convinced this quickly. I hope it's quick enough! The percentages are not in my favor for watching-and-waiting. I hope there's something here that's helpful to somebody else. One difficulty I’ve found: All 3 of the hospitals I’ve gone to use MyChart. It, therefore, theoretically, should be easy for them all to post test images that are accessible to all. It hasn’t worked that way for me so far. My impression is that drs. don’t know how it works and don’t know who to contact to make it work.

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Once I got to JH, things went smoothly and pleasantly. I had a CT scan that, unfortunately, showed an increase in size of the cyst and duct compared to a CT 4 months earlier. The JH dr. explained that a negative biopsy during an EUS was not necessarily helpful b/c it doesn't tell anything about adjacent cells. We discussed an open Whipple procedure compared to a robotic or laparoscopic procedure. Pluses and minuses to each. I'll have to discuss with my local surgeon to decide which is right for me. We discussed having surgery at JH when I live hours away. If I didn't have a local world-class cancer hospital, I would certainly consider going to JH in spite of the distance. I'm scheduled for an MRI in less than 2 weeks. After that I think I'll be scheduling Whipple surgery. I didn't think I'd be convinced this quickly. I hope it's quick enough! The percentages are not in my favor for watching-and-waiting. I hope there's something here that's helpful to somebody else. One difficulty I’ve found: All 3 of the hospitals I’ve gone to use MyChart. It, therefore, theoretically, should be easy for them all to post test images that are accessible to all. It hasn’t worked that way for me so far. My impression is that drs. don’t know how it works and don’t know who to contact to make it work.

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My amazing good news: I had an MRI on Thursday. I saw my doctor (who has done hundreds of Whipples at MSKCC), and he said he doesn't see an appreciable difference from my MRI in December. He said I don't need a Whipple, I don't have cancer, and he'll make an appointment for me to have another MRI in 3-4 months! Am I going with the opinion that I like? Absolutely! Aside from just feeling joyful, my experience has left me with a lot of ideas about hospitals, doctors, getting medical opinions, having scans at various facilities, trying to be educated from scratch very quickly. I hope I can think of a way to make it useful for somebody else, recognizing that it was just one person's experience. For the last 5 months I have been very conscious of "watching-and-waiting," not the fun part. I'm done with that. For the next 3-4 months I will just be living my normal, asymptomatic life, and very grateful for it. I'll be much better prepared if anything changes then.

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My amazing good news: I had an MRI on Thursday. I saw my doctor (who has done hundreds of Whipples at MSKCC), and he said he doesn't see an appreciable difference from my MRI in December. He said I don't need a Whipple, I don't have cancer, and he'll make an appointment for me to have another MRI in 3-4 months! Am I going with the opinion that I like? Absolutely! Aside from just feeling joyful, my experience has left me with a lot of ideas about hospitals, doctors, getting medical opinions, having scans at various facilities, trying to be educated from scratch very quickly. I hope I can think of a way to make it useful for somebody else, recognizing that it was just one person's experience. For the last 5 months I have been very conscious of "watching-and-waiting," not the fun part. I'm done with that. For the next 3-4 months I will just be living my normal, asymptomatic life, and very grateful for it. I'll be much better prepared if anything changes then.

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