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Bonita
@bonitav

Posts: 44
Joined: May 19, 2015

Pancreatic cyst

Posted by @bonitav, May 20, 2016

Pancreatic cyst detected via ultrasound and further analyzed via specialized endoscopy. Presently not malignant, but am wondering how long it could take in order for it to become malignant. Anyone dealt with pancreatic issues, pre-malignancy, etc? My Gi ordered multiple labs and has scheduled colonoscopy because of other symptoms.

REPLY

Hi,

I also had 3 cysts show up on an Octreotide Scan several years ago,
However,
in that I have Tuberous Sclerosis; that was not of major concern. Since the
Tuberous Sclerosis often has cysts on the kidneys especially, since they are
from the neuroendricine disease.

If yours are in the kidney, I would watch for Urological changes, as well as
possible stages of Chronic Kidney Disease. Otherwise, most are benign and
do little, since they are often outside of the kidney.

Kay

I have several pancreatic cysts, as I also have a history of neuroendocrine tumors in the duodenum, I was concerned.  I had an MRI and then followed up with a ultrasound endoscopy.  They did  not look problematic so I am relieved.  Another MRI will be done in a year or so for follow up.  If you want more info, John Hopkins’ website offers lots of info on pancreatic cysts. Best wishes as you follow up on these pesky things.

@hopeful33250

I have several pancreatic cysts, as I also have a history of neuroendocrine tumors in the duodenum, I was concerned.  I had an MRI and then followed up with a ultrasound endoscopy.  They did  not look problematic so I am relieved.  Another MRI will be done in a year or so for follow up.  If you want more info, John Hopkins’ website offers lots of info on pancreatic cysts. Best wishes as you follow up on these pesky things.

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Thanks so much for sharing your experience! Maybe will help me worry less. 🙂 I’ll check out the John Hopkins site. Thanks again, and wishing you the best!

@irvkay312

Hi,

I also had 3 cysts show up on an Octreotide Scan several years ago,
However,
in that I have Tuberous Sclerosis; that was not of major concern. Since the
Tuberous Sclerosis often has cysts on the kidneys especially, since they are
from the neuroendricine disease.

If yours are in the kidney, I would watch for Urological changes, as well as
possible stages of Chronic Kidney Disease. Otherwise, most are benign and
do little, since they are often outside of the kidney.

Kay

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Hi Kay… thanks for your response. First, I do have one functioning kidney, but the one that isn’t functioning does have a cyst. My kidney disease is Acute, not chronic, caused by a vascular problem that required a stent in my right renal artery.. left kidney could not be stented so it’s not working. My nephrologist isn’t concerned… for now. The pancreatic cyst is to be followed and I’ve gotten some info that helps me not to worry so much. My brother’s death from pancreatic cancer has added extra concern.
Again, thanks for sharing your experience. I wish you the best! Bonnie

Good tip on the Johns Hopkins website about pancreatic cysts @hopeful33250. @bonitav here’s the link http://www.pancreascyst.org/ If you prefer video, then you may appreciate this link too “What You Need to Know About Pancreatic Cysts”

Here’s a diagram of the Types of Pancreatic Cysts http://mayocl.in/1RfPjjF

Bonita, When are your lab tests and colonoscopy scheduled for? We’ll be thinking of you.

@colleenyoung

Good tip on the Johns Hopkins website about pancreatic cysts @hopeful33250. @bonitav here’s the link http://www.pancreascyst.org/ If you prefer video, then you may appreciate this link too “What You Need to Know About Pancreatic Cysts”

Here’s a diagram of the Types of Pancreatic Cysts http://mayocl.in/1RfPjjF

Bonita, When are your lab tests and colonoscopy scheduled for? We’ll be thinking of you.

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Bonita: My best to you as you try to worry less. If we can reduce our worries by just a “smidgen” it can do us a lot of good and help us in the healing process.

Liked by Bonita

@colleenyoung

Good tip on the Johns Hopkins website about pancreatic cysts @hopeful33250. @bonitav here’s the link http://www.pancreascyst.org/ If you prefer video, then you may appreciate this link too “What You Need to Know About Pancreatic Cysts”

Here’s a diagram of the Types of Pancreatic Cysts http://mayocl.in/1RfPjjF

Bonita, When are your lab tests and colonoscopy scheduled for? We’ll be thinking of you.

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Thanks so much! I’ll check it out as soon as my allergies calm down. lol Labs done but no results yet, and the colonoscopy is scheduled for 5/25. I know what to expect with that … have Crohns so this is done at least annually. Thanks again!

@colleenyoung

Good tip on the Johns Hopkins website about pancreatic cysts @hopeful33250. @bonitav here’s the link http://www.pancreascyst.org/ If you prefer video, then you may appreciate this link too “What You Need to Know About Pancreatic Cysts”

Here’s a diagram of the Types of Pancreatic Cysts http://mayocl.in/1RfPjjF

Bonita, When are your lab tests and colonoscopy scheduled for? We’ll be thinking of you.

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Thanks for asking, Colleen. Had the colonoscopy on 5/25. Procedure went well with several polyps removed. The anastomosis from the small bowel resection (years ago) is showing stenosis and ‘ulcerative’ features. In the afternoon, developed a low grade fever of 101.4. Called the GI and was sent for an abdominal xray to rule out a bowel perforation. Proved not to be the case. Slept and rested for almost 2 days and finally felt better. No idea what caused the fever. That process certainly took my mind off the pancreatic cyst. Will see the Gi again in July and hope to learn of the polyp biopsies. Thanks for the support here. Am currently dealing with a new BP medication and as I do research on that (Bystolic) learned I shouldn’t be taking a beta blocker at all as I also have PAD. Sorry, I know this probably sounds rambling, but a lot going on. Oh, and the MRI didn’t show the cyst because I had gone to an open MRI, which caused the Gi to be a little upset. I told her I had no idea the open MRI was inadequate and she said, now you do. She hasn’t rescheduled that yet. Thanks for listening..

@bonitav, rambling on Connect is completely allowed. 🙂
Should you wish to meet other members managing blood pressure and peripheral artery disease, please feel free to post in the Heart & Blood Health group https://connect.mayoclinic.org/group/heart-blood-vessel-conditions/

Will you have to go for another MRI then?

@colleenyoung

@bonitav, rambling on Connect is completely allowed. 🙂
Should you wish to meet other members managing blood pressure and peripheral artery disease, please feel free to post in the Heart & Blood Health group https://connect.mayoclinic.org/group/heart-blood-vessel-conditions/

Will you have to go for another MRI then?

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Thanks @colleenyoung. Not sure at this point. Was in the Mayo ER in the wee hours of Sun morning.. A partial abdominal obstruction. After IV with pain meds, was admitted and a naso-gastric tube inserted (not fun), and removed after 24 hours. Then clear liquid diet, then soft foods and was dismissed. Lots going on as I try to get the recommended GI appt. My GI wasn’t impressed with a partial obstruction… what to do after the biopsies from the colonoscopy showed only inflammation, no crohns ?, and stricture. Talked with her nurse today who was of no help. Says she’ll call again tomorrow. Didn’t think my Gi had more plans for testing…. Disburbing. **Update: call from the Mayo nurse that I now have appts with Gi specialist and Gi surgical team during first week in July! Wonderful! I can make it till then! Thanks for the support,

Liked by Bonita

@colleenyoung

@bonitav, rambling on Connect is completely allowed. 🙂
Should you wish to meet other members managing blood pressure and peripheral artery disease, please feel free to post in the Heart & Blood Health group https://connect.mayoclinic.org/group/heart-blood-vessel-conditions/

Will you have to go for another MRI then?

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That doesn’t sound like it was very fun @bonitav! You were rightfully discouraged. But look at that update! I’m delighted that the Mayo nurse followed up as promised and that you have appointments lined up. Might I suggest that you prepare a list of questions beforehand, especially with respect to whether you need another MRI. You might also keep a log of symptoms that you have over the next weeks until your appointment.

@hopeful33250 @irvkay312 do you have any thoughts on how to best prepare for the next appointment? Bonitav, what questions would you like answers to from your GI team?

Liked by Bonita

@colleenyoung

@bonitav, rambling on Connect is completely allowed. 🙂
Should you wish to meet other members managing blood pressure and peripheral artery disease, please feel free to post in the Heart & Blood Health group https://connect.mayoclinic.org/group/heart-blood-vessel-conditions/

Will you have to go for another MRI then?

Jump to this post

Sorry there was no Reply tab at the last response from you @colleenyoung so responded here. 🙂 Including @hopeful33250 @irvkay312 .

Thanks for the suggestions. I will take note of the symptoms for the next few weeks. Will also keep a food diary.

Questions for my GI: Re pancreatic cyst: when is it appropriate for a follow-up MRI (without contrast)? Will that reveal any cyst change in size, etc? Will ask if he can give me more information about the type of cyst assuming I can get more clinical findings from the original doctor.
Re anastomosis inflammation and stenosis: Are there treatments that are safe for the inflammation? Is surgery required for the stenosis? Any idea why the previous biopsy in May didn’t indicate Crohns, for which I’ve been treated for years? Is there anyway to confirm that I actually have Crohns? I’m sure I’ll have more questions within the coming weeks before the appt, but thanks for the suggestions. My best to all!

@colleenyoung Relative to the question of preparation for doctors appointment liver cyst. First I would note any and all medicines prescription or over the counter that you take. Next I would specify any changes that you have faced since your last appointment. And last, I would ask the doctor for an honest appraisal on the overall situation– even CBC changes.
As far as my personal future appointments, I was told “that when you enter Hospice, as I did; no further doctor appointments for treatment are had. The Hospice team however will make you as comforable as well as try to rid you of as much pain as possible.”

Kay

@colleenyoung

@bonitav, rambling on Connect is completely allowed. 🙂
Should you wish to meet other members managing blood pressure and peripheral artery disease, please feel free to post in the Heart & Blood Health group https://connect.mayoclinic.org/group/heart-blood-vessel-conditions/

Will you have to go for another MRI then?

Jump to this post

@bonitav:  I can only speak to the pancreatic cyst problem.  I have spoken to several doctors regarding this because of my history of neuroendocrine tumors in the duodenum bulb.  Their advice was to have a repeat MRI in either 1 or 2 years.  After the first MRI, I had an ultrasound endoscopy and everything looked benign.  My DX with regards to the pancreatic situation is intraductal papillary mucinous neoplasm (IPMN).  I found that  John Hopkins has a great website to explain the various pancreatic cysts, so if you are looking for reading material that may be a good place to start.  I hope that your other digestive problems get resolved and that you can have some peace of mind.    I know that you will be in good hands at Mayo.  I wish that I lived closer to Minnesota so that I could visit Mayo for a second opinion on a lot of different matters. Best wishes as you follow up.   Teresa

Liked by Bonita

@colleenyoung

@bonitav, rambling on Connect is completely allowed. 🙂
Should you wish to meet other members managing blood pressure and peripheral artery disease, please feel free to post in the Heart & Blood Health group https://connect.mayoclinic.org/group/heart-blood-vessel-conditions/

Will you have to go for another MRI then?

Jump to this post

Thanks @hopeful33250. Teresa, do you live relatively close to Florida? There’s a Mayo here.

If I recall correctly, the pancreatic cyst I have is a mucinous neoplasm detailed via the ultrasound endoscopy, but will have to look for the report before I go to the Mayo. My medication list is in their system already so that’s a relief. I’ve been treated for Crohns for years, yet now these symptoms in the anastomosis area were not classified as Crohns.. just inflammation, stenosis and stricture. At any rate, I’m feeling blessed to be able to get a second opinion and to know that if surgery is necessary, there won’t be any hesitation about it. I just want to be able to eat without worrying whether I’ll be in the ER at any time. I know everyone has their issues and I think about you too! Thanks again for your concerns, ideas. Bonnie.

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