Patient Comments: Pancreatic Cysts - Diagnosis

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Comment from: Lorraine, 65-74 Female (Patient) Published: May 17

Two weeks ago I went off food entirely; could hardly manage even a drink of water! Even the sight of food made me feel ill. In 2 weeks I have gone from 82 kilos to 75.2 kilos, very worrying! Yesterday I had an ultrasound and they discovered a cyst on my pancreas. I go back to my doctor tomorrow to see where to from here.

Comment from: jean, 65-74 Female (Caregiver) Published: November 21

My aunt's pancreatic mass was detected through CT scan with symptoms of bloated stomach, jaundice and abdominal pains. Our doctor confirmed it to be 80 percent cancerous, located at the head of the pancreas and gave us 6 months observation period from September to February next year. Because of her age at 72, surgery or stenting would help but not cure. So we just decided to pamper her with what she wants and as of now the situation is deteriorating within 3 months only.

Comment from: sherri, 25-34 Female (Patient) Published: April 04

I am a 33 year old female who just had my gallbladder out in November and the doctors also discovered a cyst on my pancreas. They called me today and said I have to have another scan done. I do get a lot of pain in my stomach on the right side all the time; it goes into my ribs and it hurts really badly, sometimes it takes my breath away. I also get constipated even before having my gallbladder removed.

Comment from: Amanda, 45-54 Female (Patient) Published: March 31

I had labyrinthitis last July 2015. I was walking my dog and suddenly out of the blue I couldn't carry on to get home as I felt the world was moving. I had to call out for help, luckily someone heard me and helped me and my dog back home. I then had this for 2 months where I couldn't step out of my home and everyday chores were difficult. I thought I was stuck with it! A horrible debilitating illness. It did eventually subside but even now I feel very anxious about going out. Some days are worse than others and I seem to need to chew humbugs wherever I go; not good for teeth or tum but it does help.

Comment from: gail w., 65-74 Female (Patient) Published: January 19

I have had 3 or 4 pancreatic attacks. I'm experiencing constant pain in my right midline below the right front ribs. The pain goes from the front to the back and to the right at times. MRI shows that I have 3 liver cysts, and 2 small pancreatic cysts with a slightly dilated pancreatic duct. I have bruising on my right side of my hip area and have had no falls or bumps on that side, and one of my glands on the right side of my neck is swollen. My red blood cells are low, 12 to 14 range.

Comment from: Florida, 55-64 Female (Patient) Published: June 15

On June 20 I had a lumbar laminectomy and microdiscectomy on L2 L3. I'm three weeks out and I get a vice grip pain in my left leg in the morning upon waking. I'm worried I injured the back directly after surgery. In the hospital I had a difficult time urinating and strained quite a bit to empty my bladder. I am feeling discouraged.

Comment from: Jes, Female (Patient) Published: November 05

I am 35 years old and was having what I thought were severe gas pains. I put off going to hospital for six hours when I just couldn't take it anymore. After being admitted and having ultra and CAT scan, I was told I had pseudo cyst on my pancreas. Later I had endoscopic ultra-scan and found out it is a mucinous cystic neoplasm on the tail of my pancreas, quite large! I am now awaiting surgery to have distal pancreatectomy and splenectomy. The neoplasm is as far as we know non-malignant but is pre-cancerous hence the surgery. Just want this taken care of. I constantly have fullness feeling and dull aching in upper abdomen including some back pain. I also have been very gassy for some time!

Comment from: robert, 35-44 Male (Caregiver) Published: September 28

I went undiagnosed for almost 3 years. Once confirmed as scabies I took weekly treatments at first with Nix cream and then ended up doing 5 daily treatments with Nix to get rid of it. Three months and it was gone. I figured I picked it up from a hotel I stayed at. I heard later it had some kind of infestation. I'm not sure why doctors took so long to diagnose it. It would have saved me years of suffering.

Comment from: Beth, 45-54 Female (Patient) Published: April 09

I'm a 53 year old fairly healthy female. I went to the emergency room one year ago with excruciating mid back pain and some abdominal pain. Through ultrasound they found a 4 mm pancreatic cyst. I've been through lots of tests EUS (endoscopic ultrasound), CT, and MRI. One gastrointestinal (GI) doctor claims the cyst has grown to 8 mm. The GI doctor on my health plan claims it's some sort of fold that looks like a lesion but is not. I still have dull constant abdominal pain and don't know what I should do since 2 doctors gave 2 very different opinions. All my ducts are dilated to 2-4 centimeters and I was told I may have passed a stone without knowing. I'm tired of the worry and don't know where to go. I'd like to know for sure what this lesion is.

woman with abdominal pain
Comment from: Debk, 45-54 Female (Patient) Published: March 24

I had a CT scan with contrast injection late 2014 and a number of masses and cysts on the pancreas were discovered. I was also diagnosed with pancreatitis and this was not due to alcoholism. This year I had an MRI and it was discovered I have an IPMN (intraductal papillary mucinous neoplasm) in the branch duct. I have pain, vomiting, nausea, current pancreatitis attacks but not severe enough I have to go to hospital, and recently I have started to lose my appetite as well. I'm booked in for an endoscopic ultrasound in a couple of weeks' time. I am female and 47 years of age and was shocked at this. I also have small masses on my liver, colon and stomach, all benign. The abdominal pain, nausea, and fatigue are the most frustrating symptoms I have ever experienced.

Comment from: Julie, 45-54 Female (Patient) Published: October 09

I am a 50 year old female, 2 1/2 years cancer free after treatment for uterine cancer. In a recent PET scan, a small abnormality the size of 1 mm was found on my pancreas. Blood work is normal. No symptoms whatsoever. Oncologist/gynecologist is sending me for a biopsy. He mentioned something about having a needle inserted into my gut. Lovely. I hope it's nothing but a benign cyst.

Comment from: 45-54 Female (Patient) Published: August 27

I am a 49 year old female with a massive umbilical/incisional hernia. I had a CT with oral and IV contract to look at the hernia, and they found a cyst on the tail of my pancreas. They felt it was probably benign, but scheduled a 6 month follow-up scan, which I just had done. The wonderful news is that the cyst has not done anything at all, which adds weight to the doctors' belief that it is benign!

Comment from: 35-44 Female (Patient) Published: August 14

I am 42 years old. I started having pain in my right side about 2 1/2 weeks ago. It was right where my appendix is. I have had right side pain off and on for years so I waited until the next day to see the doctor instead of going to the emergency room (ER). The doctor took blood, urine sample, and did an x-ray. She also scheduled a CT scan for the next week. I had to wait several days to get the results from all of the tests. The only symptom I have had during this whole time is pain in my right side which moves around and then in the top of my leg that sometimes runs down in the upper leg. Anyway the CT showed something at the end of my pancreas which she said is normally seen in an alcoholic or someone with stones or a family history. I have none of those things, so perhaps it is pancreatic cysts. I am scheduled for an MRI in 2 days and scared to death with all the possibilities. It is hard waiting and waiting for all these tests.

Comment from: hopeful debbie, 55-64 Female (Patient) Published: January 02

I have had diabetes and been taking oral medications for over 10 years. I noticed that I was having abdominal pain which became more frequent, and then daily about 2 months ago. I had a CT scan with oral agents only (due to my allergies) It revealed a small tissue mass on the head of my pancreas. I was scheduled an endoscopic ultrasound of the pancreas with a gastroenterologist that does pancreatic cancer research. He found that I have a stomach ulcer and a small pancreatic cyst on the head of my pancreas. This was in December 2013. He did not do biopsy on it due to the small size. I have a follow up appointment in February 2014. I am taking Prilosec twice daily. I still have some abdominal pain. I am now taking insulin as my blood sugars no longer are helped by my oral medications.

Comment from: mspip, 19-24 Female (Caregiver) Published: October 02

I had this miserable scabies for over a month before I went to doctor. I used neem oil and neem soap but saw little improvement. I was given prescription for permethrin cream a week ago today. It is still itching and I have read information from clinic which says it may keep itching for two weeks or more after treatment. Do not order an online ointment which I did, a really convincing ad and it was guaranteed or money back. I am sending it back today. Three places are the worst; abdomen, upper chest, and back of left hand. A bit unsightly but all can be covered with clothing except the hand. It seems that it came from a motel which looked clean, but a few weeks later I got scabies.

Comment from: Agatina, 75 or over Female (Patient) Published: August 11

I had an MRI one year ago for breathing problems and they saw this cyst where the tail of the pancreas begins. It was either 1.1 centimeters or 11 centimeters. My follow-up MRI for this is in four days.

Comment from: carolyn4lyf, 25-34 Female (Patient) Published: July 14

I still don't know what I have, it's been 4 years. I had pain first and I was told it was a cyst in my liver. After a CT scan it's a 5 cm growth in the inside of my pancreas. In the meanwhile I had 5 endoscopies. I was pregnant at 20 weeks, and they cut me open to look at it and said I need an abortion, but I said no. It grew vesicular arteries so surgery is not an option. I gave up and just stopped going to doctors, when they can't tell me what I've got.

woman with abdominal pain
Comment from: Redhead, 19-24 Female (Patient) Published: October 08

I am a healthy 24-year-old woman and have never consumed alcohol. I've had dull pain in my stomach area for months off and on and brushed it off as not eating enough. Last week the pain intensified immensely and ended up in the emergency room with pain all across my stomach. All of my blood work was perfect. The pain eventually subsided to just my left side so the doctor ordered a cat scan and they found a cyst in the tail of my pancreas.

Comment from: atbruno498, 25-34 Female (Patient) Published: June 06

I am a 31 year old, healthy female. I was admitted to the ER with abdominal pain, yellowing of the skin and nausea. They performed a CT scan, because appendicitis was suspected. No appendicitis, but they did find a 26mm by 27mm "cyst" in the body of my pancreas. After undergoing an endoscopic ultrasound and biopsy, they found that it was in fact a mucinous cyst, and that it was pre-cancerous. I then met with a Surgical Oncologist, who advised me that I would need to undergo a subtotal pancreatectomy, as well as a splenectomy, as the tumor was pressing on the artery that fed into the spleen.

Comment from: mbriseno, 35-44 Female (Patient) Published: December 01

Dr ordered a CT scan to check for kidney stones. No stones were found but they did find a 2.6cm cyst on the body/tail junction of my pancreas. Had a contrast CT 3 days later, the radiologist said that he suspected that it was either a pseudo cyst or a simple cyst but a neoplasm could not be ruled out through that imaging so I had to see a specialist. I decided to cut through the red tape & immediately made an appointment with a surgical oncologist who specializes in pancreatic/liver cancers. Met with him 2 weeks after my initial scan and he says that he is also pretty sure that it is a benign simple cyst, I am going for an MRI just to be sure. As long as the MRI is good, the oncologist says he will monitor me for a year & if the cyst doesn't change we will just leave it alone and move on down the road.

Comment from: homeschool mom, 35-44 Female (Patient) Published: May 24

I had a dull pain and pressure in my right side in the front and back. I had white cells and a trace amount of blood in my urine spec. I was sent for an ultrasound where it was discovered that I had a pancreatic cyst measuring 1.5 centimeters in addition to an ovarian cyst. I will be going for a CT scan to clarify.

Comment from: Sunflower, 75 or over Male (Caregiver) Published: September 23

My husband's cysts were first noted in an abdominal CT scan but the internist failed to heed the radiologist's suggestion to do further tests. He has Type II diabetes. We saw a surgeon who sent him for a EUS and FNA. The FNA caused acute pancreatitis which caused pseudo cysts. These cysts multiplied and within an 8-month period it had grown by a factor of five. They now surround the single meniscus cyst like a large cluster of grapes and have caused the pancreas to be enlarged and decrease the capacity of his stomach. He cannot have surgery because that would cause brittle diabetes He also is on dialysis because later his only kidney failed. His health is now so fragile no one will do another EUS. Because of his kidney he is not allowed any contrast die so a CT scan is virtually useless. Choose your doctors carefully and read every report immediately and make sure action is not delayed. Ask how many FNAs have been done and what % have caused pancreatitis......

Comment from: Vivian, 55-64 Female (Patient) Published: January 05

In April 2015 I was diagnosed with cirrhosis of the liver and had a close to dead episode, but I never drink alcohol, and there is no hereditary factor. Apparently it was the consequence of the flu I had for too long, and a urine infection that get worse. My immune system couldn't take it, and attacked my liver, creating a liver failure, and now I have cirrhosis. It is important to check and follow with your doctor.

Comment from: worriedmother, 19-24 Male (Caregiver) Published: May 07

My son was admitted to the hospital on 2/7/2015 where he has been currently be in and out. He has a feeding tube and has lost 62 pounds. He has a so called pancreatic cyst that has grown from 1 mm now to 15 mm; they just keep putting off surgery. He is in constant pain and is getting very worn down.

Comment from: LLE, 25-34 Female (Patient) Published: May 23

I am a 29-year-old healthy female and I had been having abdominal pain for about four years. I went to the ER four years ago but no tests were done at this time. I was given pain pills and sent home a couple hours later. For the next four years, I would have on-again, off-again pain in that same area. About a year ago, I had my IUD removed, thinking it was causing the pain, but the pain persisted. I saw my PCP about a year ago, she ordered a CT scan, and they found a pancreatic cyst on the tail end. Since then, I have had two MRIs, an EUS, another EUS to drain the fluid, one X-ray, and three CT scans. The fluid that was taken was ½ one type of cyst and ½ another type. The cyst keeps growing, and the doctors have finally decided it should be surgically removed, along with my spleen and gallbladder. I'm hoping to get some feedback from others who've had this type of surgery and if they acquired any additional health problems, like diabetes.

woman with abdominal pain
Comment from: Laura, 25-34 Female (Patient) Published: May 10

I am 31, and an otherwise healthy and fit female who does not (and never has) consumed alcohol. After four months of feeling queasy all the time and pain in my right side and back, my doctor sent me for an ultrasound to check my gallbladder. It was fine, but they found a 3-cm cyst in my pancreas. They think it looks like a pseudocyst, but I will have CT scan in the next few weeks to confirm it and decide what to do next.

Comment from: Beko, 25-34 Female (Patient) Published: October 16

I had a kidney stone that I was unable to pass, ended up in the emergency room, had a CT scan and discovered a 15 cm tumor on my pancreas. Had a partial pancreas removal and spleen removal. Turned out to be a malignant Pseudo papillary tumor of the pancreas. Have been disease free for 4 years.

Comment from: Student01, 55-64 Male (Patient) Published: June 12

My pancreatic cysts (total of 3, largest 18mm by 24mm) were first noticed when my doctor wanted to look at my liver via ultrasound. The test indicated I had "fatty liver" (no one seemed to care about this), but what was first called "a mass on my pancreas" was noticed. An EDU procedure identified them as cysts. I write to tell people about waking up during the EDU process, it is not pleasant, and I have been a chronic pain patient for 4 years. During this 4 years I have developed a tolerance for drugs that treat pain. The doctor said it was this tolerance that made me wake up. My doctor said I am no longer a candidate for this low level sedation. I guess I gave them a bit of trouble (I do not fully remember), and I am pretty big and strong, they do not want a wrestling match again. I think my cysts will be dealt with through surgery (mainly as I search for reasons I have so much back pain), and I have a feeling I will have my gallbladder taken out as I show moderate/severe chronic pancreatitis, but I do not drink at all and stopped drinking 9 years ago.

Comment from: janelle, 35-44 Female (Patient) Published: May 03

I am now 40 years old. Four years ago I had my gallbladder removed due to gall stones and one stone lodged in a liver duct. I then had a separate surgery to remove the stone in 2009. I had pain in my right side and I went to the doctor who then did a scope to see what was going on. He said there was sludge in the liver duct and he removed it. During the surgery he cut my pancreas, which caused pancreatitis. I was in the hospital for two months then was sent home on a feeding tube for two months. After getting off the feeding tube I went back to the doctor to find out I have a cyst on the head and tail of my pancreas. They started out small. That was in 2009. Now in 2012, the one on the head of the pancreas is the size of a grapefruit. I am having it drained, and I am truly scared. I am also now a type 1 with diabetes taking six insulin shots a day. Only 20 percent of my pancreas works now. I am hoping after today the pain in my right side and back will go away. I have had pain block after pain block and they just don't seem to be working so all and all I hope all goes well.

Comment from: Lauren19380, 75 or over Female (Caregiver) Published: May 03

My 81-year-old mom had upper abdominal pain for a few months, then started having dizzy spells where she would nearly lose consciousness for a few weeks before she told anyone. We had noticed that she was getting thinner, but were shocked when she revealed a 25 pound weight loss over three months. At a doctor's office visit, her hemoglobin was 6 and she had pain and palpations in the upper left abdomen. She was immediately admitted to the hospital, given two units of blood, and a CT scan was performed. Several cysts were noted in the tail of the pancreas. After an MRI, the doctors assured her the cysts were not malignant. An endoscopy revealed a large bleeding ulcer and she was discharged with medication. I am concerned about the pancreatic cysts, but everyone else feels satisfied that her symptoms have been adequately explained by the ulcer. My mom has always been extraordinarily fit and healthy and now she just looks like a pale ghost of her former self.

Comment from: Kasey, 45-54 Female (Patient) Published: April 05

I had an endoscopic retrograde cholangiopancreatography (ERCP) in 2008 after having gallbladder surgery. The surgeon stated I had something going on with a bile duct that didn't look exactly right on X-ray. After the ERCP, I had acute pancreatitis. I stayed in the hospital a total of three weeks. During the next 8 to 12 months I started having right-side pain and it hurt to bend over. My doctor sent me for a CT scan thinking it might be a kidney stone and it was then that they found the cyst on my pancreas. I was sent to a surgical oncologist and I had repeated CT scans every three months to see if the cyst has grown. The cysts were not filled with fluid, but tissue. My options are limited. I have to go back in a week for another scan to see if the cyst has grown.

Comment from: Paininside, 45-54 Female (Patient) Published: March 28

I found I had a pancreatic cyst after I ended up in the hospital for five days with pancreatitis. I had been having pain in the area for some time, but assumed it was due to the gastrostomy tube I had inserted in 2001 due to esophageal dysphasia from type 4 systemic scoliosis. After I left the hospital and saw my doctor, I was told the pancreatic cyst was 7 cm x 4 cm. It was larger than they wanted, but due to the other medical issues I have, we decided to wait and watch. Even though I continued to have pain it wasn't enough to put me in the hospital. We attempted to drain the cyst prior to going on a cruise, but found that the "liquid" was not drainable. It was more of a jelly consistency than liquid. We went on a cruise and took it easy and after we returned I had another CT scan. Then I received a surprise we had not anticipated and it was a second cyst. This cyst is considered medium size, and again, we are waiting and watching. I still have pain, not enough to go to the hospital though, and because of all the other issues, I am almost to the point of telling them to go and either do the test (scope) that typically causes pancreatitis, or to just do the surgery and take the cysts out. I expect there may be more on the pancreas than they can see through a CT Scan -- cannot have an MRI because of a neurostimulator implant in my back.

woman with abdominal pain
Comment from: petalpusher, 45-54 Female (Patient) Published: August 18

My pancreatic cysts were diagnosed found when I had a MRI for my low back pain. I have to schedule a CT Scan every year now. I am staying away from alcohol, and trying to stay away from sugar.

Comment from: sterling, 65-74 Female (Patient) Published: January 14

The cyst on my pancreas was found during an ultrasound when checking my gallbladder. I have been having MRIs for about five years to check the size of it, and so far, it has not grown or changed.

Comment from: Rc, 45-54 Female (Patient) Published: January 25

Pancreatic cysts were diagnosed during an abdominal CT scan. Had gone to the hospital ER due to an intestinal bug. Doctor ordered a CT scan to rule out appendicitis.

Comment from: me, 55-64 Female (Patient) Published: January 05

I am a 63 year old female who has had right pelvic pain only at a specific point for 2.5 years. All gynecology tests (pelvic and transvaginal untrasounds and tumor marker) were negative. When it suddenly became more intense and lasted for a few minutes, a CT scan was done. The 0.6cm pancreatic neck and 0.7 cm pancreatic body mucinous cysts were found. I am awaiting my appointment with the pancreatic surgeon.

Comment from: very afraid, 55-64 Female (Patient) Published: January 05

In May 2011 I had my gallbladder removed. In the tests leading up to the removal they found 2 large stomach ulcers and 3 small cysts on the tail of the pancreas. I waited 6 months and just had the ERCP with contrast and will find out the results on Monday the 9th. of January. What should I ask and what should I expect from the cancer surgeon. Thanks for your concern.

Comment from: catssam, 65-74 Male (Caregiver) Published: June 02

I have Hairy Cell Leukemia which is in remission. I ran a high fever 2 weeks ago and was sent to the Emergency room by my primary care dr. A cat scan revealed cysts in my pancreas, liver and 1 lung. However, they are too small to biopsy at this time. Antibiotics have stopped the fever.

Comment from: MaryDVal, 55-64 Female (Patient) Published: May 23

My cysts were seen after dealing with colorectal cancer, nothing was done. Three years later I was diagnosed with cholangiocarcinoma.

Comment from: G, 45-54 Female (Patient) Published: May 18

My pancreatic cyst was discovered by CT scan done to help determine unexplained rapid weight loss and diarrhea. My next step is an upper GI and small intestine tissue biopsy to see if I have Celiac Disease. Another CT scan will be done in 6 weeks to see if any change in pancreatic cyst which is very small only 11mm. -- 48 year old Caucasian female.

Comment from: sm8173, 65-74 Male (Patient) Published: April 28

I have Polycystic Kidney Disease and was participating in a study run by the Rogosin Institute at New York Presbyterian Hospital. As part of the study, periodic MRI's are done of your kidneys and surrounding areas. They discovered a cyst on my pancreas in the results of the MRI.

Comment from: Mum, 19-24 Male (Caregiver) Published: March 09

My son was diagnosed with pancreatic cyst aged just 21. He is now having 6 monthly scans to keep an eye on things as the cyst is still there 18 months after diagnosis. There is little information given at the hospital and we just sit waiting to see what the future brings for him. He gets rather down as his life revolves around medication, trips to the GP and regular visits to the hospital.

Comment from: 45-54 Female (Patient) Published: March 09

MRI but likely due to gallstones. Had gallbladder removed and have had 1 follow up MRI to see if cysts changed in size. They didn't and have follow up for 2011 to see if any changes. 48 year old female.

Comment from: CU812, 45-54 Female (Patient) Published: February 14

My pancreatic cysts were diagnosed through a stomach ultrasound.

woman with abdominal pain
Comment from: Laura, Female (Patient) Published: January 21

I was diagnosed with a 5 mm side branch I.P.M.N. as an incidental finding. I had EUS which showed very auspicious specimen with rare benign cells. I was wondering how often to have it checked and am confused as to what to do as a result of different answers from different physicians, all the way from once a year to never.

Comment from: Bob, 65-74 Female (Caregiver) Published: January 21

My wife's pancreatic cysts were diagnosed via CT Scan.

Comment from: Gingerbread1275, 55-64 Female (Patient) Published: September 30

Mine was through an abdominal CT scan done because of abnormal blood work results for liver and alkaline photophase as well as intermittent diarrhea (usually when I eat rich or greasy foods which isn't often).

Comment from: Steve, 45-54 Male (Patient) Published: May 20

My pseudo cyst was found during a follow-up CT scan of an adrenal adenoma. This was 10 months after my acute pancreatitis and 8 months after an adrenal MRI that did not indicate a pseudo cyst. My doctor indicated that I would have a follow-up CT in 6 months for the pseudo cyst and adrenal adenoma. The pseudo cyst is 3 by 4 cm and was not causing any symptoms.

Comment from: fiddlesticks, 55-64 Female (Patient) Published: September 29

I just found out today that a ct scan for another issue revealed a cyst or some other abnormality in/on my pancreas. I am scheduled for a MRCP for further diagnostics. So no more googling. It's only depressing.

woman with abdominal pain
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