Just got word back from my primary care physician that my most recent abdominal scan shows a 3.5cm cyst on my pancreas. Last year, when Dr. Libutti at NIH looked at the cyst, it was between 1.5cm and 1.9cm - Dr. Libutti said he wouldn't need to see me for another two years.
I'm sending a CD-ROM with my scans up to NIH for Dr. Libutti to take a look at - I understand that these cysts can look different on different machinies, or with different radiologists taking a look - and I'll let everyone know what he says. It will probably be a few weeks, though - this is apparently a "non-urgent" matter, which I suppose is good news, but it's nerve-wracking.
I don't have any symptoms, but sure would hate to lose my pancreas.....
Anyway, as always, thoughts, prayers, and stories from folks going through similar things are most welcome!
- Dave
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Pancreatic Cysts
- By Dave
- Posted October 31, 2007 at 11:59 am · 5 replies
- In Getting a diagnosis
- Shared with the public
5 replies
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- By FranMott
- Posted November 1, 2007 at 11:38 pm
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Hi Dave:
You are fortunate that Dr. Libutti is following you. He is one of the ‘experts’ we look to when seeking answers regarding pancreatic involvement and VHL. That does sound like a considerable growth spurt for a pancreatic cyst, but like you suggested, it may only “sound” like that. You’ll be getting the best opinion on that, so try not to worry. You’re right that scan reports can be very different depending on who did the scan, who read it and the quality of the machine the scan was done on, among other factors. The bottom line in VHL is that even though small lesions may not be seen each time, or larger ones measured differently, there’s usually no doubt when something is big enough or in a serious enough location to require action. Again, Libutti will be able to shed some light on your particular case.
I have a pancreas that, on the scans, “appears to be completely replaced with pancreatic cysts”. It has been reported like that since the early 1980’s when I was first diagnosed. I have lots of cysts in every size from mm to 4cm and up. Someone else might have only one or two tiny cysts, or even no cysts. I have “cysts on cysts, in cysts and around cysts”. Even so, my pancreas still functions, so obviously it isn’t “completely” replaced and there is still enough healthy pancreatic tissue somewhere amidst those cysts to get the job done. Cysts in the pancreas are very common in VHL. They usually do not matter unless they are so big that they are causing discomfort, or in a location where they are (or will be) blocking something, or if they have actually crowded out so much of the pancreas’ tissue that it is not functioning properly. The more worrisome growths we get in this organ are the solid tumors, not the fluid filled cysts. Usually the cysts just sit there, giving everyone something to look at in the scan pictures. If there is a problematic cyst, it can often be drained, hopefully by an interventional radiologist experienced doing this procedure in VHL. I had that done successfully on one extremely huge one many years ago.
There is not any set growth rate for these cysts. Each one just seems to grow (or not grow) as it darn well pleases. The good news is that you sound like this cyst is not causing you any symptoms. Try to relax while you wait to hear from Dr. Libutti. Let us know what he tells you. We’ll keep our fingers crossed that this little guy is in a safe place where he just stretched out and got himself a little more room to expand a bit and will now settle down and go to sleep. The pancreas is an amazing organ. It seems to be able to stretch all over in the gut to accommodate a whole lot of cysts and it seems to only need a small amount of healthy tissue to do the job of the whole organ. –And I thank God everyday for that. Good luck to you and keep us updated.
Fran Mott
Michigan
- By Dave
- Posted November 2, 2007 at 6:26 am
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Fran:
Thank you *so* much for your kind and thoughtful response. It gives me a lot of comfort to hear your story - I pray that you will continue to do well, and that my story will be similar.
I noticed when reading your response - I didn't even see this when I posted myself - that I posted my original comment on the fifth anniversary of my father's death. He passed away from complications from VHL, after having his kidneys removed and struggling with dialysis. He never had any issues with the pancreas, that I was aware of - but tumors throughout the spine, brain, and kidneys.
It's amazing to me how different each case of VHL is from the next - and yet, nonetheless, the comfort we can get from each other, and each other's stories.
In any event, thank you. You made my day.
Dave
- By Ed-ColoradoSprings
- Posted November 3, 2007 at 10:55 am
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Hi Dave,
Like Fran, I also have a Pancreas covered in cysts. I never would have known they were there except as they got bigger they started to cause problems a couple of years ago by compressing the bile duct. In my case, they've drained fluid during an EUS procedure twice but I still have compression issues with the bile duct. For me, they've put a stent into the bile duct to keep it open. That seems to work well and its a procedure that's done endoscopically during an outpatient surgery. The only down side is the stent needs to be replaced every three months.
The other side effect that I've developed from the cysts, and their effect on the bile duct and pancreas is a high sensitivity to fatty foods. If I consume something with too much fat content, it will cause a great deal of pain. I have been given a prescription for pancreatic digestive enzymes that helps with digestion. A positive side effect of this, is that I've avoided fatty foods for a couple of years now and dropped 30 pounds of unneeded weight. A silver lining in the cloud.
Wishing you well.
Ed
- By Dave
- Posted November 5, 2007 at 9:45 am
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Thank you, Ed. I really appreciate the fellowship this community provides, and your story brings great comfort. I could also stand to lose 30 lbs - though I hope this isn't the way I have to do it!
Best,
Dave
- By cathhi
- Posted October 20, 2009 at 10:43 pm
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Hi Dave! It seems you and I are at the
same place. I have a 3mm in the tail of
pancreas and just sent my ct scan and
biopsy to Dr. Libutti for his review and
opinion. I do not want to lose my spleen!
I hope I can have the cyst removed laposcopically. I will keep you in my
prayers. Also will keep you updated on
my situation.
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