pancreatic mucinous cyst

Hi Everyone,

My mom was diagnosed two months ago with a pancreatic mucinous cyst in the head and neck of the pancreas. Her tumor is approx.2 cm and has not grown since a routine scan in Nov. 07 for what they thought was diverticulitis. She was then again misdiagnosed with gallstones which required an emergency surgery (while on vacation in Honduras) two months ago. She was really having a pancreatitis attack. It was then that they saw the tumor.

She is scheduled to have the Whipple procedure this Friday with Dr.Levi at the UM Sylverster Center in Miami. She is having the surgery because of the high likability of the cyst turning into cancer and because she is obviously symtomatic. However, I still have no peace.

Anyone with this type of pancreatic cyst or information with any advice will be greatly appreciated.

Hi. My pancreatic cyst was found in March this year. April they did a biopsy and assured me it was nothing. Well they were wrong. I too had a mucinous cyst in my pancreas. It was 1.8 x 1.6 cm. I was told that they needed to do a whipple to assure it would not turn to cancer. I was SHOCKED. I am a 35 year old mother of 6 and could not believe it. I had my whipple 5/16 and am still healing. I was in the hospital a week and one week later had an infection and my incision had to be opened and packed. It was terrible. They had a wound vac on my incision to close it up and yet another infection reared its ugly head this week. I have a CT scan monday to see if there is anything going on that would warrent another surgery. I sure hope not.

How is your mother healing? Does she notice that her taste buds aren't the same? I noticed that. I have also lost 45 pounds in 6 weeks. How is your mother feeling?

Thanks

I would greatly appreciate responses from those people who have had a similar experience to mine and could give me some guidance.  I went to Mayo Clinic in Rochester, Minnesota during July.  While I was there, I had a CAT SCAN related to the prostate.  The specialist found nothing abnormal concerning that physical area.  However, the radiologist discovered a 3cm cyst in my pancreas.  After conducting an endoscopic ultrasound down my throat, a physician determined the cyst was benign.  Nonetheless, the gastroenterologists advised me to have the growth surgically removed to eliminate the possibility it could become malignant.  The doctors regard a 3 cm cyst in the pancreas to be too large to merely observe.   As I understand the condition, that size has a greater tendency than a smaller one to become cancerous.

 

I would have to experience a whipple procedure that even the Mayo doctors consider a very serious and extensive surgery with potential undesired side effects/health consequences.  The literature quoted a 40% “morbidity” rate (i.e., unexpected surgical development).  I was told that my chances of the cyst becoming cancerous over the next five years is somewhere around 10-15%.  I am tempted to have a follow up “imagery” done in January (6 months after the first images) through an MRI and/or CAT Scan to determine if the cyst is growing or not and might have been from my wishful perspective “dormant” for years. 

 

 I really do not know how to proceed in this situation. It seems somewhat like a “catch 22” circumstance (i.e., Both choices might be “wrong.”).  I would be grateful to receive responses from other people who have experienced a similar situation if not identical and worked his/her way through it hopefully without harm.  Your guidance would be sincerely appreciated during a troubling period of my life.

 

Hi there...

My dad had the same thing as you. He had the Whipple procedure done on Sept. 30, and just got home the day before Thanksgiving. This has been such a horrible experience. So many ups and downs. He got a leak and still has a drain tube in and that constantly leaks. He got an infection and also had a wound vac. He is home but with a big gaping hole that has to be dressed and changed all the time. He has lost 50 pounds and won't eat anything. His taste buds are gone. Before this he was very active. Walking everyday and going to the gym swimming every other day and now he is just wasting away. He looks horrible. Have you found anything that tastes good. We are at a lost as to what to do to get him to eat.

Thanks, Dee Dee

On 9/9/2008 wondering33 wrote:

I would greatly appreciate responses from those people who have had a similar experience to mine and could give me some guidance.  I went to Mayo Clinic in Rochester, Minnesota during July.  While I was there, I had a CAT SCAN related to the prostate.  The specialist found nothing abnormal concerning that physical area.  However, the radiologist discovered a 3cm cyst in my pancreas.  After conducting an endoscopic ultrasound down my throat, a physician determined the cyst was benign.  Nonetheless, the gastroenterologists advised me to have the growth surgically removed to eliminate the possibility it could become malignant.  The doctors regard a 3 cm cyst in the pancreas to be too large to merely observe.   As I understand the condition, that size has a greater tendency than a smaller one to become cancerous.

 

I would have to experience a whipple procedure that even the Mayo doctors consider a very serious and extensive surgery with potential undesired side effects/health consequences.  The literature quoted a 40% “morbidity” rate (i.e., unexpected surgical development).  I was told that my chances of the cyst becoming cancerous over the next five years is somewhere around 10-15%.  I am tempted to have a follow up “imagery” done in January (6 months after the first images) through an MRI and/or CAT Scan to determine if the cyst is growing or not and might have been from my wishful perspective “dormant” for years. 

 

 I really do not know how to proceed in this situation. It seems somewhat like a “catch 22” circumstance (i.e., Both choices might be “wrong.”).  I would be grateful to receive responses from other people who have experienced a similar situation if not identical and worked his/her way through it hopefully without harm.  Your guidance would be sincerely appreciated during a troubling period of my life.

 

Hello. I was wondering how you've faired with this health issue? I hope you've had the best health with whatever option you have chosen. My mom - age 78 - was diagnosed with a mucinous neoplasam in her pancreas. Hers is 2.9 cm x 3.1 cm. We've done follow up CTs and it appears to be stable and not growing. Her biopsy didn't show any cancer but a few atypical cells - meaning they don't know if it will ever turn to cancer but that it does have a chance. From what I've read about the whipples, I don't want to put her thru that at her age. She probably could live out the rest of her life without it growing and her quality of life wouldn't be altered by surgery. However, we aren't sticking our heads in the sand either and we are finding the best MDs for her (she has Kaiser in California) and we are going to do imaging CTs with and without contrast with special pancreatic slices. People need to make sure they have their CTs done where they are used to doing pancreatic studies and make sure it's a 64 slice machine or higher. A 1 slice or 16 slice CT wouldn't probably be as effective.

Hi,

I read your mail and i am interested in know how is your mom right now, after surgery.  On February i was diagnosed with a pancreatic mucinous cyst.  I have a sonoendoscopy by mouth and biopsy was benign. At that time, the cyst was 4.8  Last week i have another CT Scan and the cyst now is 2 x 1.8  Doctors told me that i need a Whipple surgery and i am very affraid.  Please let me know more about the surgery and how is the recovery of it.

 

Thank You

On Jun 20, 2010 11:42 PM loufer wrote:

Hi,

I read your mail and i am interested in know how is your mom right now, after surgery.  On February i was diagnosed with a pancreatic mucinous cyst.  I have a sonoendoscopy by mouth and biopsy was benign. At that time, the cyst was 4.8  Last week i have another CT Scan and the cyst now is 2 x 1.8  Doctors told me that i need a Whipple surgery and i am very affraid.  Please let me know more about the surgery and how is the recovery of it.

 

Thank You

Hi,

 

My husband was diagnosed in November 2009 with Mucinous cyst neoplasam. He is 67 years old and very active. It was found when he had a CT scan in October 2009. My husband had the Whipple surgery on 6/18/10 at UMC In Tucson, AZ. The doctors who preformed the surgery were Dr. Evan Ong and Dr. Jie who are both superior surgeons with extensive background knowledge with this procedure. My husbands cyst was large like yours and all pathology reports were negative. My first suggestion is to find a facility and doctors who have preformed numerous (more then 50) Whipple procedures and speak with patients who have had this procedure performed by the doctor who is doing the surgery. UMC in Arizona, Anderson in Texas, John Hopkins in Maryland, Mayo Clinic in Minnesota and Sloan Kettering in NYC are the top hospitals who specialize in this this procedure. Once you gather this information and choose who will be preforming the surgery this will make things go easier. On 6/18 the surgery was preformed and my husband was in surgery 7.5 hours. They took 50% of the pancreas I old you a BIG cyst), 70% of the duodenum, 50% of the stomach, complete gall bladder and about one foot of the small intestine. Ask prior to surgery to have a epidural as this was most effective pain management for him. My husband was in the hospital for 11 days and was released with one drainage tubes and a feeding tube which was places in his small intestine. The one drainage tube was pulled out by the doctors nurse in his office 3 days later. At present time (3 weeks after surgery) the feeding tube is still in and continues to provide nutrients for him. When you start on the feeding tube the nutrionest will advise you to have the feeding at a "normal" rate of feed. PLEASE.... PLEASE only take in what you can do!!!! For example they may want to start you on 60ml but your body can only do 20, 30 or maybe 40ml. START OUT SLOW!!!! If not, IT IS HELL!!!!! When you get home adjust what and how much you need. ONLY YOU NO HOW MUCH YOUR BODY CAN TAKE..... SPEAK UP!!!!!! The biggest obstacle now is eating. Everything my husband started eating he hated it and it taste awful. PLEASE DON'T BE SCARED THIS IS NORMAL!!!!!! YOU MUST be patient and realize that everything you did eating wise in the past is GONE!!!! Three weeks to this date and my husband continues to make great improvements in eating liquid and solid foods and only needs to use the feeding tube as needed. His pain is tolerable to and only takes pain medicine as needed. At surgery he is 6'0 and weighed 175 pounds. Three weeks after he is 161 pounds. You WILL lose weight but don't be alarmed. The biggest obstacle my husband faces is the "hiccups, gas" situation. This is caused by eating fatty foods (eggs, bacon, sausage) and since your pancreas is PISSED because it is reduced it does not have the capability to break down foods fast enough like it did in the past. As of now he does not have to take enzyme pills and of the many patients Dr. Ong operated on they also do not!!!! Many experts believe it is because they leave a section of the duodenum (my husband 30%) in place. ASK your doctor how much they plan on leaving!!!!! If he/she is resitant or not willing to share then keep asking or possibly find another surgeon. It is a slowwwwwww recovery (never listen to time frames as each person is different) but over time you will heal both physically and emotionally and be back to your old self again!!!! Good luck and all will work out.

I too had an IPMN discovered purely by accident Oct 09.  It was 4 cm and was removed by surgeons at Memorial Sloan in Dec.  It was benign, thank God.  Surgery was 7 hours and my hospital stay 8 days.  In the beginning (1-2 months) I was unable to eat many of the foods I was accustomed.  Pre-diabetic, I now use insulin to manage my blood sugar.  A third of my pancreas remains although they removed the duodenum and gall bladder.  It has gotten better over the months.  My appetite has dramatically improved although the flatulence which I'm sure affects all patients is persistent (get use to it and just warn those around).  My weight has increased after initially loosing 25 pounds. I am doing many of the things I was accustomed to pre surgery including travelling abroad and exercising.  An unfortunate aside was that an abdominal hernia developed where additional surgery is required. I consider myself lucky and God willing can stay here a lot longer. Again, hang in there as it does get better

Thank you so much for your insight into the Whipple surgery. I too have a Mucinous cyst. It was found three years ago after a car accident. Beacuse it is in the head of the pancreas they have been vey hesitant to remove it. I had been having CT scans every 6 months to be sure the cyst was not growing. Last Wednesday I had my periodic CT scan and the nurse called with the results. '"The scan of your pancreas shows a change". Not what I was expecting to hear. I am a 49 year old mother of three grown boys.  am seeing my surgeon thiis afternoon so that she can go over the results with me and my husband. She has already told us that if we decide to do any surgery she would not be the one to perform it. After doing research on the surgery the last couple of days I know know why. I am just a little nervous about the appointment today and what she is going to say but I have a good attitude. The cyst is still pretty small (2.2x2.2x4.6) but I think the last CT scan showed it as being 1.7x1.5 or something like that, so although it is a small change it is still a change. Any advice on what I should ask would be a great help for upcoming appointments and decisions. I live in the Charlotte, NC area and have been very healthy all my life. This is so weird.  Thanks for listening.

I had my whipple on july 9th this year.  It went very well I thought.I was out in 6 days and on my way home.I did looses a total of 65 lbs but have gained about 15 back so far.  My main problem was the weight loss and loss of appetite.I couldnt eat anything for two months but did force myself to eat I dran ensure and ate alot of pbj sandwiches and I mean a lot.  Make sure the doctors have alot of experince in this surgery and that you are completly comfortablewith the surgeons.  You will get alot of good info on this site also.  So take what you wnat and toss the rest.  just go by what the surgeons and nurses say and you should be just fine.

God bless you

Rick