1. < Pancreatic Cancer

Pancreatic cyst

Posted by Bonita @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.

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vickeyb | @vickeyb | Dec 21, 2021

I was reading with interest the reports on pancreatic cysts. I have one that is being watched(MRI every 2 yrs) but recently have been having more diarrhea, at least one to four movements daily. My gastroenterologist did a VIP blood test which presented with higher numbers and now I have a US endoscopy scheduled for early January. This will be my 2nd one.
What should I be watching for, very nervous about the findings. Thanks for any help!

REPLY
2 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Dec 24, 2021
In reply to @vickeyb "I was reading with interest the reports on pancreatic cysts. I have one that is being..." + (show)
@vickeyb

I was reading with interest the reports on pancreatic cysts. I have one that is being watched(MRI every 2 yrs) but recently have been having more diarrhea, at least one to four movements daily. My gastroenterologist did a VIP blood test which presented with higher numbers and now I have a US endoscopy scheduled for early January. This will be my 2nd one.
What should I be watching for, very nervous about the findings. Thanks for any help!

Jump to this post

Hi Vickey, I can understand your nervousness. You might be interested in this related and more recent discussion about Pancreatic cysts with @susan2018 @faithann64 @jeanne5009 @wrolsen and others.
- Cyst on Pancreas? https://connect.mayoclinic.org/discussion/cyst-on-pancreas/

I hope the holidays help to distract you until your endoscopy in early January. Enjoy your family and the festivities of the season.

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Dec 25, 2021
In reply to @vickeyb "I was reading with interest the reports on pancreatic cysts. I have one that is being..." + (show)
@vickeyb

I was reading with interest the reports on pancreatic cysts. I have one that is being watched(MRI every 2 yrs) but recently have been having more diarrhea, at least one to four movements daily. My gastroenterologist did a VIP blood test which presented with higher numbers and now I have a US endoscopy scheduled for early January. This will be my 2nd one.
What should I be watching for, very nervous about the findings. Thanks for any help!

Jump to this post

Hello @vickeyb

I can certainly understand your concern, as I also have pancreatic cysts. Unlike you, however, I've had no symptoms and the watch and wait approach is being followed with MRIs every two years. In the in-between years (when no MRI is done), I've always asked for pancreatic blood work to be done to assure that there are no major problems.

You mentioned having a VIP blood test done. As I am not familiar with that abbreviation I did some research

(https://pubmed.ncbi.nlm.nih.gov/1983854/) and I see that it is done to predict the possibility of neuroendocrine tumors in patients that have diarrhea.

Has the possibility of a neuroendocrine tumor (NET) been discussed with you? As I have had three surgeries for NETs of the duodenal bulb, I'm wondering if you have other symptoms of NETs such as hot flashes?

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vickeyb | @vickeyb | Dec 25, 2021

Thank you for your reply and I too have an MRI every 2 yrs. this diarrhea has been getting worse and that’s why my gastroenterologist decided to do the VIP test, now the next course will be the US endoscopy to see if that cyst is releasing this enzyme. My endoscopy is scheduled for 1/20/22, will keep you posted!

REPLY
2 replies
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Dec 25, 2021
In reply to @vickeyb "Thank you for your reply and I too have an MRI every 2 yrs. this diarrhea..." + (show)
@vickeyb

Thank you for your reply and I too have an MRI every 2 yrs. this diarrhea has been getting worse and that’s why my gastroenterologist decided to do the VIP test, now the next course will be the US endoscopy to see if that cyst is releasing this enzyme. My endoscopy is scheduled for 1/20/22, will keep you posted!

Jump to this post

@vickeyb I will look forward to hearing from you. I wish you good results!

REPLY
judithsh | @judithsh | Jan 28, 2022

I'm looking for help in how to think about my situation. I have not discussed it with anyone except my spouse and my doctor because I don't want to worry family and friends needlessly. I have no symptoms. A routine 6-month checkup showed normal blood test results and normal urinalysis except for several additional red blood cells so my dr. sent me to a urologist. His urinalysis was normal but he sent me for a CT scan which showed a PD dilation of about 5mm. and a pancreatic head cyst of about 2.7 cm. A local oncological surgeon who does a lot of Whipples sent me for an MRI and an EUS. A biopsy was negative. Raised amylase is consistent with IPMN. Samples from the EUS were sent to PancraGEN to test pancreatic head cyst fluid which concluded there is a "statistically higher risk," recommending "close followup as further progression may not occur." Sounds like they are hedging their bets! I also saw an oncological surgeon at a famous cancer hospital. The only difference in the two surgeons' recommendations: the former recommended an MRI in 6 months (June) and the latter made an appt for an MRI in 3 months (March).
If either the PD or the cyst is larger at the next MRI, I think both surgeons will recommend a Whipple before cancer develops. Here's what I think about:- I am 79 years old. I am well. I am energetic. Were it not for Covid, I would be living a normal, active life. I think I would rather live my life and take my chances of a pancreatic cancer death sentence, than give up months and and probably much more to a Whipple recovery. I would think differently if I were 59 or 69. (The surgeons have told me they have lots of old patients!) Anybody have an opinion about what I should be doing or thinking?
Easier question: Should I make an appointment at the Cyst Clinic at Johns Hopkins, which would not be inconvenient for me? (Odd to be asking that on a Mayo website I guess.) Or are two opinions that don't really differ sufficient? Or could I be useful at JH where they seem to do a lot of PC research?

REPLY
3 replies
beachdog | @beachdog | Jan 28, 2022
In reply to @judithsh "I'm looking for help in how to think about my situation. I have not discussed it..." + (show)
@judithsh

I'm looking for help in how to think about my situation. I have not discussed it with anyone except my spouse and my doctor because I don't want to worry family and friends needlessly. I have no symptoms. A routine 6-month checkup showed normal blood test results and normal urinalysis except for several additional red blood cells so my dr. sent me to a urologist. His urinalysis was normal but he sent me for a CT scan which showed a PD dilation of about 5mm. and a pancreatic head cyst of about 2.7 cm. A local oncological surgeon who does a lot of Whipples sent me for an MRI and an EUS. A biopsy was negative. Raised amylase is consistent with IPMN. Samples from the EUS were sent to PancraGEN to test pancreatic head cyst fluid which concluded there is a "statistically higher risk," recommending "close followup as further progression may not occur." Sounds like they are hedging their bets! I also saw an oncological surgeon at a famous cancer hospital. The only difference in the two surgeons' recommendations: the former recommended an MRI in 6 months (June) and the latter made an appt for an MRI in 3 months (March).
If either the PD or the cyst is larger at the next MRI, I think both surgeons will recommend a Whipple before cancer develops. Here's what I think about:- I am 79 years old. I am well. I am energetic. Were it not for Covid, I would be living a normal, active life. I think I would rather live my life and take my chances of a pancreatic cancer death sentence, than give up months and and probably much more to a Whipple recovery. I would think differently if I were 59 or 69. (The surgeons have told me they have lots of old patients!) Anybody have an opinion about what I should be doing or thinking?
Easier question: Should I make an appointment at the Cyst Clinic at Johns Hopkins, which would not be inconvenient for me? (Odd to be asking that on a Mayo website I guess.) Or are two opinions that don't really differ sufficient? Or could I be useful at JH where they seem to do a lot of PC research?

Jump to this post

@judithsh my wife had her surgery at JHH so not so strange to be asking on a Mayo site. Between my wife and myself we probably keep an eye on half a dozen different communities for pancan. My question is why so fatalistic? If you have pancan and it's early stage, get treated. Everyone is different and the progression of the disease is unpredictable. My wife was 61 when diagnosed and she has been through three different chemo regimens, radiation and surgeries but she's still fighting and we're hopeful that the current treatment keeps her stable long enough for a complete remission. Go to JHH. They are excellent and you'll receive the best possible treatment. Good luck and bless you.

REPLY
1 reply
bb21 | @bb21 | Jan 28, 2022
In reply to @judithsh "I'm looking for help in how to think about my situation. I have not discussed it..." + (show)
@judithsh

I'm looking for help in how to think about my situation. I have not discussed it with anyone except my spouse and my doctor because I don't want to worry family and friends needlessly. I have no symptoms. A routine 6-month checkup showed normal blood test results and normal urinalysis except for several additional red blood cells so my dr. sent me to a urologist. His urinalysis was normal but he sent me for a CT scan which showed a PD dilation of about 5mm. and a pancreatic head cyst of about 2.7 cm. A local oncological surgeon who does a lot of Whipples sent me for an MRI and an EUS. A biopsy was negative. Raised amylase is consistent with IPMN. Samples from the EUS were sent to PancraGEN to test pancreatic head cyst fluid which concluded there is a "statistically higher risk," recommending "close followup as further progression may not occur." Sounds like they are hedging their bets! I also saw an oncological surgeon at a famous cancer hospital. The only difference in the two surgeons' recommendations: the former recommended an MRI in 6 months (June) and the latter made an appt for an MRI in 3 months (March).
If either the PD or the cyst is larger at the next MRI, I think both surgeons will recommend a Whipple before cancer develops. Here's what I think about:- I am 79 years old. I am well. I am energetic. Were it not for Covid, I would be living a normal, active life. I think I would rather live my life and take my chances of a pancreatic cancer death sentence, than give up months and and probably much more to a Whipple recovery. I would think differently if I were 59 or 69. (The surgeons have told me they have lots of old patients!) Anybody have an opinion about what I should be doing or thinking?
Easier question: Should I make an appointment at the Cyst Clinic at Johns Hopkins, which would not be inconvenient for me? (Odd to be asking that on a Mayo website I guess.) Or are two opinions that don't really differ sufficient? Or could I be useful at JH where they seem to do a lot of PC research?

Jump to this post

I am 74 female and diagnosed with possible IPMN about 2 years ago, They watch me every 6 months and then suddenly I had a cyst, tested positive, I underwent the Whipple this February and wish I had done it 3 months earlier. I had a wonderful surgeon that the nurse told me was a focused surgeon and would have me out in 3-4 hours rather than usual 6-8. Indeed he did. I had a block for the surgery and it helped me get up and walk sooner. I went home in 5 days rather than 8-10. I did have intestinal issues 2 weeks later as the intestines and other organs had to adjust. Ate a lot of broth and crackers with peanut butter and high protein drinks. Lasted for about 3 weeks with the oncologists helping me manage the discomfort. Was not fun but it subsided as they predicted and I would do it again. No cure for Pancreatic cancer so for me if I were in your situation and love life like I do, I would go for it. You are young. My surgeon was Dr. Allen at Duke University Medical.

REPLY
bb21 | @bb21 | Jan 28, 2022
In reply to @beachdog "@judithsh my wife had her surgery at JHH so not so strange to be asking on..." + (show)
@beachdog

@judithsh my wife had her surgery at JHH so not so strange to be asking on a Mayo site. Between my wife and myself we probably keep an eye on half a dozen different communities for pancan. My question is why so fatalistic? If you have pancan and it's early stage, get treated. Everyone is different and the progression of the disease is unpredictable. My wife was 61 when diagnosed and she has been through three different chemo regimens, radiation and surgeries but she's still fighting and we're hopeful that the current treatment keeps her stable long enough for a complete remission. Go to JHH. They are excellent and you'll receive the best possible treatment. Good luck and bless you.

Jump to this post

Totally agree, I too am fighting metatasis to the liver. A rare genotype for my tumor that loves to become resistant to treatment but I am on my third set of Chemo and always looking for new options, Every month I live give research another month for me and for others.

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jan 29, 2022
In reply to @vickeyb "Thank you for your reply and I too have an MRI every 2 yrs. this diarrhea..." + (show)
@vickeyb

Thank you for your reply and I too have an MRI every 2 yrs. this diarrhea has been getting worse and that’s why my gastroenterologist decided to do the VIP test, now the next course will be the US endoscopy to see if that cyst is releasing this enzyme. My endoscopy is scheduled for 1/20/22, will keep you posted!

Jump to this post

Hi @vickyb

You mentioned in your last post that you would be having an US endoscopy on January 20. I hope all went well with that procedure.

How are you feeling? Did you find out the results and if the cyst is releasing the enzyme?

REPLY
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