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VHL Pancreatic Cyst Drainage

FranMott
0 Recommendations

If you have had a problematic pancreatic cyst drained, would you please share your experiences? Where did you have it done? Who did it? How did they go about it? Was it successful? and How long ago did you have it done? (The length of time it has been since any procedure was done is very important, to us as patients, in determining its overall long-term success rate.)

Usually pancreatic cysts in VHL do not cause any problems, unlike the solid tumors that some VHLers can get in their pancreas. (There is a study going on at NIH looking at the VHL solid tumors in the pancreas, but not the cysts.) A pancreatic cyst can cause trouble if one becomes so large it causes pain because of its mass, or if it is in a bad location where it is pressing on or blocking something. In a few cases, the pancreatic cysts can become so numerous that the function of the pancreas is affected. Even less commonly, diabetes can develop.

It's worth repeating that usually the pancreatic cysts do not cause any problems. For example, for almost 30 years, my abdominal CT's have reported that the entire pancreas looks to be replaced with pancreatic cysts. This is not real common in VHL, but certainly not unheard of. However, it is common to have many cysts in the pancreas if you have VHL. There are folks with certain VHL mutations who seem to not develop any pancreatic cysts, or at least very few.

If you have had any procedure done for a problematic pancreatic cyst, will you please share your story?

Thank You,

Fran Mott
Michigan

Explore topics in this discussion:

Surgery Jaundice Pain Stent Diabetes

16 replies

joyceg98

Sounds like a case for a phone call. Please call the Hotline at 800-767-4845, ext 1, or the office at 800-767-4845 ext 4 an we will try to hook you up with a doctor who knows more than most about VHL in the pancreas.

Best wishes,
Joyce

Hope2000

I just found out I have a growth on my pancreas. My doc keeps giving me the run around and Im not sure what to do. Can a growth be on the outside of your pancreas?? Should I get it removed ? My doc mentioned som ething about meds that shrink it down....does anyone know anything about this. Im all alone and keep spending my monet on CTs and teast for the same result. How long would I be in the Hospital for ???I just need help. I live in TX

Hope2000

I just found out that I have a growth on my pancreas. My doc is saying its covering my pancreas . Does that mean its on the outside. I just got a ct and waiting for results. What are the procedures done and how long are you in the hospital for?

FranMott

Hi Ed,

Thank you for sharing your experiences. The combined and varied experiences, treatments, and problems resulting from pancreatic cysts in VHL patients will help us learn more about this less common source of trouble for VHL patients.

Ed, you mentioned that you had 2 endoscopic procedures to examine and drain the fluid from some pancreatic cysts. Do you know any more details of the procedure, such as what they did after they removed the fluid from each cyst, if anything, to keep the cyst from refilling? I’m very interested in finding out what different doctors have tried.


I think it might be helpful to folks reading this to mention here again that most people with VHL who have pancreatic cysts (even large numbers of pancreatic cysts) do not have problems from them. However, is some cases (again, not comonly) the large size or extreme number of, or the position of, a cyst or cysts can cause a variety of problems. These can include pancreatic insufficiency, or pain, or obstruction of the pancreatic duct and others. The pancreas contains different kinds of cells. Some secrete the hormone insulin, and some cells secrete digestive enzymes that aid in the breakdown of food. The pancreas secretes these enzymes into the pancreatic duct, which joins the common bile duct from the liver and drains into the small intestine. If the pancreatic duct becomes blocked it can be very serious, so they have to find a way to correct the problem.

The procedure Ed has had done sounds like a stent (or tube) is placed in the duct to hold its sides open. This is done by endoscopic retrograde cholangiopancreatography or ERCP - going through a tube which is put down the throat to put a stent into the problem area in the duct. I am not real familiar with the procedure and am terribly oversimplying the description, but perhaps Ed can explain it better to anyone whose doctors may be talking about this.

Ed, you mentioned that you need to have this stent replaced every three months. Will this stent replacement procedure have to be repeated every three months indefinitely or is this all a temporary type of solution? I am wondering if the ERCPs could cause pancreatitis on their own, and/or if there is much problem with infections or bleeding risks from the procedure and from the stent itself.

If anyone else has had any experiences with pancreatic duct obstruction or with pancreatic cyst drainage can you please share your experiences too?

Thank you, Ed, for helping us learn more about all this.

Fran
Michigan

Ed-ColoradoSprings

Hi Fran,

I've been dealing with pancreatic cysts for many years. Like you, have a pancreas pretty much covered with them. Until a few years ago, they didn't cause any issues. Then they grew/multiplied to the point where the common bile duct and pancraeatic duct became obstructed and developed digestive issues, jaundice, weight loss, etc.

I've undergone 2 EUS (endoscopic ultrasound) procedures with FNA (fine needle aspiration) to examine and attempt to drain fluid from the cysts. Since the cysts are so numerous, the drainage didn't help much so the EUS mainly becomes a biopsy/diagnostic procedure.

To prevent the common bile duct from closing, I have a stent in my bile duct. It's replaced every three months via an ERCP procedure. If it stays in longer, its subject to clogging/infection. A year ago, I had one of these get infected and spent some time in the hospital as a result. Pain from infection and occasional flare ups of pancreatitis can be a pretty nasty experience.

I take pancreatic enzymes with each meal to help with digestion as the pancreas is no longer carring its full load. This helps digest foods.

ERCP's are done at Memorial Hospital in Colorado Springs by a gastroenterologist. EUS was done at University of Colorado Hospital in Denver.

ERCP with stent replacement is about a 30 minute outpatient procedure, done with anesthesia in my case. The EUS is more like 1-2 hours as it is a more complex procedure, also done with anesthesia in my case. After either of these procedures, there is no more that a day or so of down time, so its not so bad.

Hope this information is helpful to you.

FranMott

We all thank you for your well wishes and hope you are able to get the advice you need quickly from Dr. Libutti. Do let us know how things work out for you. We are all learning together -VHL or not- when it comes to draining pancreatic cysts and are all here to help each other.
Fran

glennco

Dear Fran and Joyce, I want to thank you for your responses. In my many hours of research on the web I saw your article on a search engine. I am not a vhl patient and sorry to say I had to look up what it is. I wish the both of you and everybody else who has vhl the very best. I've just been going out of my mind trying to figure out my next move. I agree that a second opinion would be a smart choice and I'm going to call Dr. Libutti. Again thank you so much for your time and your help. Sincerely, Glenn

FranMott

Hi ‘Glennco':

You did not mention if you are a VHL patient or not. -Regardless, I hope you will follow Joyce’s suggestion and contact Dr. Libutti for a second opinion. It sounds like your doctors are conveying a sense of urgency to have this serious surgery done, so I would try to reach him as soon as possible, if I were in your place. Dr. Libutti has a great deal of expertise when it comes to dealing with pancreatic lesions and issues.

There are different types of tumors, as well as different types of cysts, that can be found in the pancreas. While the types may typically be more limited with VHL disease, even we can get other diseases (like anyone else can) to complicate diagnoses, etc.

Besides the cysts and islet cell or neuroendocrine tumors we might see with VHL, there are mucinous cystic neoplasms, branch-duct intraductal papillary mucinous neoplasms (IPMN), main-duct IPMN and many others that members of the general population can get in their pancreas. A main-duct IPMN could present as a cystic lesion in the pancreas. A main-duct IPMN might look like an isolated harmless cyst. Sooooo, there are a lot of things that can grow in the pancreas that can confuse the doctors, surgeons and even radiologists….let alone how confusing it is for us to understand it. With better scans today, more types of cysts and tumors in the pancreas are being diagnosed. Differentiating between them is important to avoid incorrect treatments and diagnoses.

Nobody wants to second guess your doctors. We are not doctors and do not know if their actions or recommendations are wrong or right, so the best advice we can give you is to quickly consult a pancreatic expert and see what his recommendations will be. I personally believe that everyone should always try to get at least one other opinion before undergoing any major procedure. Your doctors are saying to have surgery relatively soon, so why not play it safe (err on the side of caution if anything) and consult with Dr. Libutti ASAP.

I do not know if you have VHL or not, but one of the things I have been trying to do is find out what treatments VHL patients have undergone for problematic pancreatic cysts and what the outcomes have been. Regrettably, there have been several reports of unsuccessful pancreatic cyst drainage procedures in VHL. There have been a few successful ones reported to us so far, (myself being one case,) but we do not have enough feedback yet to help figure out what treatments work best or why. I would be very interested in hearing what Dr. Libutti tells you, if you would be willing to share that, VHL or not. We will all keep you in our thoughts and hope you can quickly get advice you’ll want to hear. We’ll keep our fingers crossed---keep us posted. Many of us completely understand and share your frustration and concerns.

Best Wishes to You,

Fran Mott
Michigan
us-mi@vhl.org

joyceg98

Dr. Libutti at Albert Einstein Medical Center/Montefiore Hospital in New York is the world's expert on when to operate on VHL tumors of the pancreas. He is no longer at NIH, so "second opinion" would be on a fee-for-service basis, but I would seriously recommend you consider asking his opinion. His office telephone is 718-920-4800

You will want to read and share with your doctors the article he did for us most recently, at http://www.vhl.org/newsletter/vhl2007/07capancreas.php

Best wishes,
Joyce

glennco

Dear Fran, I had a 4.1cm pancreatic cyst drained three months ago. Univ. of miami sylvester did eus with fna which almost collapsed the cyst completely. I just went back for follow up cat scan and now my cyst is back measuring 5.3cm. Now they want to remove the body & tail within the next 2 weeks. I don't know what to do, before they said it looked fine (benign) now they are not sure , they seemed more concerned with my duct having mucinous. I wanted to have it drained again but they said the best thing was to have it removed (distal pancreatectomy). WHAT TO DO.........

FranMott

Dear Katie:

Thank you for sharing your story. It certainly must have been a nightmare for you and for the surgeon! I hope you will not have any problems necessitating something to be done again on that cyst. It's possible that it might not be a problem even if it does fill again. It may not refill. We'll keep our fingers crossed that even if that cyst should fill up again, it will never get to the point that you will have to do anything about it. -and that is possible. I've heard of quite large ones never causing a problem. I've got to imagine that these must be a little like water ballons and have some give to them or those of us with huge collections would have them bulging out all over and be running into frequent blockages.

Keep us posted on how you are doing. We all care and particularly those of us with large collections of these cysts, and those who have had problems with big ones, are in your corner praying and cheering for you. Keep an eye on this sight and we'll see what else we can learn from each other.

Best Wishes,
Fran Mott
Michigan

FranMott

Hi Mary:

Thank you very much for your reply. It is very helpful. It does sound like this was successful for you and perhaps may prove to be a solution for others when drainages haven't worked. It is definitely a very major and far more risky procedure, in comparison to draining a cyst; but if the outcome is more reliable, it may be an option for some who can't find any other solution.

It was quite a long time ago you had this done. Do you know if the doctor or medical center has done any more? Would you mind sharing any contact information (if you still have it) for them? There are very few doctors interested in the pancreatic cysts and it would be good to try to get any who have dealt with them talking with each other about their experiences. Please feel free to e-mail me at us-mi@vhl.org if you prefer not to post that. Thank you very much.

I hope you never have to deal with any cysts growing too large or causing any problems in the future. Most pancreatic cysts don't cause problems, but when they do - once is enough for anyone. Thank you again for sharing your story. It is valuable information to increase our knowledge base on how to deal with these.

Fran Mott
Michigan

FranMott

Hi Gale:

Good advice on foods and it certainly is worth trying. I might add that alcohol and greases and oils can cause problems for some people with such a collection of cysts, sometimes even a tiny amount. -And still I’ve heard of others in the same shape not bothered by anything. Greases include anything like fried food, sausages, donuts and such things that are not good for you anyway. Oils can include any kind, even the healthy ones such as olive oil, fish oil and the natural oils in whole grains. For example, some people can double up with pancreatic pain after eating all natural whole grain bread – I learned that the hard way. Other people with a big collection of the pancreatic cysts have no problems with any of it. I guess you just have to try things and learn by trial and error.

Like you, I've also heard of some people who have had the pancreatic cysts drained and they have refilled. I had one large one successfully drained in 1994 and it has never refilled. They were able to go in through the outside of my body because of the position of it. They went through a small one in order to get to the large one and that small one refilled. That was expected because they were concerned with a leak the little one had. They did not want to risk putting a hypertonic saline solution in it, like the larger one, after they drained it. It would be too dangerous if the solution drained into the pancreas. They did drain all that out of the larger one and then rinsed the cavity. They theorized that the solution would end up causing the walls of the cyst to scar together when it all collapsed thus hopefully stopping it from refilling. It’s been 14 years and it has not. Unfortunately the doctor and center no longer do this particular work. I am very curious what procedures others have had done and the methods used to hopefully figure out what works, what does not, and how much may just be a matter of good or bad luck.

Regarding the person you heard of whose pancreatic cysts were filled with water, was that ever confirmed? When analyzed, the fluid from mine showed amylase values much higher than normal, but not high enough to indicate that there was a communication with the pancreatic duct. If there was, the whole plan would have been cancelled. To date I’ve not had any of my cysts rupture, leak (on their own), or burst. Actually the doctors had some unexpected difficulty trying to push through the wall of my cysts and had to try a second time with a stiffer catheter.

Perhaps the contents of these cysts can vary and even the thickness of the walls can be quite different? -Don’t know. Hopefully we’ll hear from more people who have had procedures done on the pancreatic cysts so we can all learn more.

Thanks,
Fran
Michigan

Poodleperson

Hi Fran

I also have pancreatic cysts "too numerous to count". The largest one, followed every 6 months for 2 years finally was drained in October. My urologist agreed to unroof and drain the renal cyst, then remove it laprascopially. Notice I said renal cyst. Only it wasn't. When it came time to remove the empty sac it was discovered to be on the pancreas. My surgeon literally left the OR to find a specialist to assist him. (Lucky for me I slept through the entire procedure.)

It was agreed to sew the cyst closed and leave it in place. This changed the surgery and hospital time. My drains were checked regularly to make certain no pancreatic fluid had leaked. Later my doc said if he had known it was on the pancreas he would not have agreed to the surgery.

This thing was so big I named it! It had been causing me problems for 2 years but at the end I was in a lot of pain so I asked for it to be removed. The MRIs showed the continuing growth of the cyst, but was so big not the radiologist nor the urologist could tell it was on the pancreas. Now I expect it to fill again--just how fast I'm not sure. My 6-month follow up is in April.

I had one cyst rupture 8 years ago and the pain was horrible. I was working and felt something inside "pop". Hours later I needed to go to the ER, but it was too late to do anything but treat the pain.

My question is what can be done for these large cysts? I can't find a doctor who knows what to do here in Oregon. My GP has emailed NIH for me, but no response. The nearest pancreatic specialist is in Los Angeles.

Good luck to all of us!

Katie

MaryP

18 years ago I had a cyst that was quite large and causing pain. A surgeon performed a Roux-en-Y anastomosis where he connected a part of my small intestine to the cyst in order for it to have a permanent drain. I was much younger then, and had no issues or problems with the recovery or my pancreas. My pancreas is also covered in cysts, but I have not had any further problems. (I would hate to go through that surgery now that I am so much older.) Anyway, this is my experience with draining a pancreatic cyst. Hope it helps.

gale

Hi Fran,

I was told my pancreas is virtually covered as well. I have also noticed certain foods bother me, so I stay away from them. I also feel better when I don't mix my foods, ie carbs and protein.

I have heard of someone who has had a pancreatic cyst that keeps filling up and it gets drained. I was told on two separate occasions, the cyst had burst. There was only water inside the cyst. The first burst was confirmed by doctors using a CT. The other burst was known because there was an incident, then the pain went away along with the protrusion of the area.

In my opinion there wasn't much time before the cyst filled up again.

I hope this helps some.

Gale

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