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Can someone please talk to me if they found out they had a cyst or growth on their pancreas. I m feel all alone and my Docs are giving me the run around and Im paying all my money on tests where they keep telling me the same thing. Please any adice or HELP!!
Whoa!
Relax! My pancreas hasn't been seen in years and it's really OK. I have countless cysts and am relatively asymptomatic. I'm not treating them in any way at present.
Like everything else in VHL, everyone's experience is different. Some of us have the cysts drained, some have digestive problems, some develop diatbetes, and some don't.
Maybe right now you can SLOW DOWN and TAKE CONTROL. You can download the VHL Handbook for free from vhl.org and read the chapter on the pancreas. Use this info to build your strategy. With a rare disease, it's easy for us to know more than the docs. They can't give you the runaround once you've educated yourself because then you can take your business elsewhere, so to speak.
Do you have digestive problems? If not, probably all you need to do is keep an eye on your pancreas with regular screenings.
If you have digestive symptoms, be sure to read the pancreas article in the latest VHLFA newsletter and share it with your doctor if it seems relevant.
I've always seen myself as asymptomatic and assumed my (very minor) digestive issues were from a relatively high-fiber vegetarian diet. But now, I'm going to look into the enzyme replacement therapy that might help with my bloating.
Your description here is brief--I'm assuming you DON'T have emergency type symptoms, but the best advice I can give you is slow down, don't panic, get educated, and question every test they want to give you. Doctors in many towns have never seen VHL before, but there are lots of resources to help you educate them.
Yes, relax a little. My pancreas glows like Vegas. It's literally riddled with cysts. I found out b/c about 2 yrs ago I was at my gastroenterologists office to check on Mr. Panc and I said, "Oh man! What's that big clump of glowy things?" "That's your pancreas." You could've knocked me down with a feather! But, I get the ol'panc checked yearly and nothings going on, no movement, no growth, so my pancreas glows on.
I make it sound funny but seriously, I got 2 opinions on my pancreas glowing w/cysts and both dr.'s (and my urologist for good measure) told me there's nothing to worry about and just keep checking it yearly w/a CT. Most of the cysts are fluid and it's not abnormal. It's like those little krill creature things that live on whales out in the ocean. It's not necessarily the amount of cysts, it's about if and when they CHANGE that you need to worry, ok? If one grows, or starts to solidify, then you need to up the alert level.
Good luck and don't stress out. Take it one step at a time. You'll get there. :o)
On another humorous note, I like to think all those cysts are the reason I've never developed washboard abs. However, my overall intake of cookies probably has some effect there as well.
Funny ALB! I will have to start using that excuse too (although cookies are also more likely the reason for my less than flat tummy...)
My pancreas is also "full of cysts" as my dr.s tell me. I just found out about 6 months ago following a routine scan. I have no symptoms and will be going for another scan soon to make sure there are no changes. After that I'll continue to have my regular scans every year.
My mother, in her 50s, had to have her pancreas removed. She was having serious digestion issues, a lot of pain and had many cysts and we found out after the surgery, a couple of tumors. (We didn't know we had VHL at the time.) She now has an insulin pump and is healthier than I can remember her being in a long time. She's an excellent role model.
Like the others said, try to relax. I was stressed at first too but I find reading about others experiences helps. Good Luck!
Good Morning Ladies
As with anything related to VHL or any other illness, If you do not take control in your mind and manage your own health, nobody will.
I thing we tent to get over existed about growths in our bodies that normally do not belong there and we then experience angxiety attacks; most of it is in our own mind.
ALB, thanks for the constant reminder that we need to SLOW DOWN, get as much FACTS and INFORMATION about the situation as possible because once you UNDERSTAND what is going on, your will automatically be more RELAXED. All of this leads to TAKING CONTROL of the situation and once you're in control, you experience ACCEPTANCE which leads to HEALING. At this point, NOTHING can STOP you. Now your mind is clear and not cluttered with all the unknown facters.
Best of luck with the information gathering and remember to TAKE CONTROL.
Just piling on here...
Three years ago, when my first cysts started showing up in my pancreas - including some pretty big ones - the head of endocrinology at one of the leading medical centers here (who knew nothing about VHL) wanted to schedule me for surgery immediately.
I was every bit as nervous and confused and worried as you - and this community helped calm me down.
Dr. Libutti (formerly at NIH, now at Albert Einstein, and my VHL pancreas guru) took a look at my scans and shrugged. No symptoms, no hard tumors, no worries.
He looks at my scans every few years, I'm symptom-free, and for now - we just stay vigilant.
Good luck, God bless, and do go ahead and reach out to Dr. Libutti or someone else who specializes in VHL pancreatic cysts. We're pretty different from the ordinary pancreas.... :-)
I was just told yesterday by my family doctor that I have a cyst in my pancreas. I am terrified as I know what the results of pancreatic cancer are. I am female 67 and scheduled for an MRI. Can anyone put my mind at ease. I have quite a lot of abdominal pressure, but no real pain.
Hi greenbug,
Do you have VHL? I am only familiar with pancreas cyst problems with VHL. I have several cysts on my pancreas, as do LOTS of people with VHL have. They usually cause no problems. Sometimes, folks have them surgically drained, and most of the time we just watch them to make sure they don't change size. Cysts in the pancreas can become large enough to disrupt some pancreatic function of digestion or insulin production, but not often. In VHL, what we worry about are hard tumors. When these get > 2-3 cm they can spread to other parts of the body.
Let us know if we can help on this website, but most of us have VHL.
Tina
I've had numerous pancreatic cysts for years. Other than occasional abdominal pressure, never had any real problems until a couple of years ago. At that time they got large enough and numerous enough that they caused compression of the bile duct and therefore blockage of the ducts. In addition, they cause the pancreatic nerve to kick in occasionally which can be quite painful but usually passes - basically "pancreatitis". I have a plastic stent in my bile duct which is replaced every 3-4 months to help keep the bile duct open (if it closes up, you get juandiced) - this is done in a 30 minute outpatient endoscopic procedure. Also have digestive problems (intolerance of fatty foods) due to pancreatic insufficiency. The MRI is one diagnostic procedure, but for further analysis an EUS (endoscopic ultrasound) can be used to take samples of the lesions for microscopic analysis).
I understand that lesions of the pancreas are scary, but get tested and if its not the kind of tumors to be worried about, the rest of it can be dealt with.
Best of luck and hope things turn out well for you.
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