Monitoring a Pancreatic Cyst?

Posted by mikewdby @mikewdby, Aug 31, 2023

Hello,…I have to ask for people’s experience and support.

I am 68 years old. In June of 2022, during a routine examination (for a hernia) my GP a CT Scan picked up a 4cm Cyst on my Pancreas. Subsequently I had an MRI in the Twin Cities the next day. Being my GP is Mayo trained, and we live the summer months in the Twin Cities, they were able to get in me at Mayo within 2 week.

July, 2022 Mayo conducted a contrast MRI AND an EUS. The MRI confirmed the 4cm cyst. They did NOT take a sample biopsy of the Cyst as they said it was too risky (close to a vein). However they said it had no suspicious signs (whatever that means). My CA-19 score was ‘16’. They said I should follow up with them in 3 months for another contract MRI. I did so at Mayo in October - no signs of growth and my CA-19 was ‘15’. A followup was suggested for late January.

Since we spend our winter months in Ft. Myers, FL, The follow up with the fun at the Jacksonville Mayo clinic in late January 2023. No growth and CA-19 was ‘16’. A followup then was Suggested when we got back to Minnesota. In late July, we had a follow up contrast MRI at the Rochester Mayo - no growth, same CA-19 score. At the time I was told, that if it showed no growth in everything, stay the same, we could go with an annual follow up.

However, a few days later after I thought, I had a year of “breathing room” to relax, The doctor Team assigned to me recommended that I do another six months follow up due to the size of being 4 cm.

So now I am confused. Has anyone else had cyst monitored of this size and the time periods I am experiencing?

I am slightly obese (5’9 250#) and a surgeon (Dr. Smoot) once had a video session with me saying I would be in the ‘high risk’ category plus my pancreas was ‘spongy’ and prone to leakage and thus complications. Of course, my initial reaction was “let’s take it out of there while it’s not cancerous. Dr. Smoot did say that in the next 3-4 years there will be other treatments / methods (without mentioning what those options are) for my type of cyst.

So I will need to go back for a few days “vacation” in Jacksonville in late January - again.

I don’t know if I can mentally take this roller coaster ride every six months. I have faith in God and yet I am someone embarrassed that I am not trusting in His Will. His Will has gotten me this far…I feel unworthy asking for more good results.

Would like to here from Others who have had pancreatic cyst that were monitored for a period of time, how long that time was,and what was decided. Thank you and God Bless.

Interested in more discussions like this? Go to the Pancreatic Cancer Support Group.

Everybody is different, no cases it seems are identical, but my experience is that in July 2021, scans showed a 2cm cyst in the tail of my pancreas on the main duct. MRI suspected IPMN. EUS came back as benign. Surgeon decided on monitoring in a year. In June 2022, the cyst was 2.1 cm, but the duct around the cyst was noticeably dilated. So, I had pancreatectomy and splenectomy. Hospital for five days - no complications. Clean margins, lymph nodes good, but cancer noted in the resected portion of the pancreas. I had six months of Folferinox to chase down any cancer cells floating around, but they got to my liver and I'm on Gemzar Abraxane currently. Best wishes and I hope this is helpful.

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Ken thank you. A where did you have your surgery and subsequent treatments

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The emotional reactions to this "waiting for something to happen" are unpredictable. Can feel like a "black cloud" hanging over one's head. I have had surgery and will be taking Olaparib to treat minimal residual disease. I thought I had accepted my diagnosis pretty well and I am in a favorable category but I have a feeling of foreboding, something could happen at any time. I am surprised at my emotional reaction. I don't feel your reaction is unusual and not a sign of lack of faith. You are certainly worthy.

It is reassuring that the surgeon is at one of the top institutions in the country, but even so, a second opinion at another one of the top institutions might be helpful to you. If there was good agreement between two surgeons, it might give you more peace of mind.

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My husband has one, 1.3, in his tail. We are getting a second opinion. I don't trust anything in the pancreas.

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@mikalleb

My husband has one, 1.3, in his tail. We are getting a second opinion. I don't trust anything in the pancreas.

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If you do not mind me asking,…Where was your initial diagnosis done and where will go for your second opinion? Did they do an EUS and a blood test Ca-19)?

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He had melanoma on his back, that was surgically removed. 3 months later at his CT scan the found cyst on tail. This was his cancer Dr who discovered it. He said they would just watch and come back in 6 months. I said no, we are going to mayo. I just lost my uncle to PC and my mom 1.5 years ago. I couldn't wait.

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@mikalleb

My husband has one, 1.3, in his tail. We are getting a second opinion. I don't trust anything in the pancreas.

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Yeah tumour in the pancreas is somehow elucid and hard to detect unless the tumour has spread and symptoms starts. My partners was incidental finding through CT for hernia. Luckily encapsulated n slow growing He's had his operation today 6/9 for lap distal panc/spleen. The recovery and complications yet to find out. Hope 🙏 things will be alright

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During a scan on my prostate my urologist detected a cyst on my pancreas. I had a endoscopy with a specialist who said it was not serious and to have scan done in a year. Should I get a second opinion? I had a sister who died of pancreatic cancer at 50 years old. They did not take a biopsy.

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@rwr

During a scan on my prostate my urologist detected a cyst on my pancreas. I had a endoscopy with a specialist who said it was not serious and to have scan done in a year. Should I get a second opinion? I had a sister who died of pancreatic cancer at 50 years old. They did not take a biopsy.

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Do you know your sister's genetics of the tumor? ATM, BRCA? 2ND opinion wouldn't hurt if your insurance or group will allow it. As often stated on this pancreatic thread, "go to a center of excellence" to get your 2nd opinion, and good luck!

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@rwr

During a scan on my prostate my urologist detected a cyst on my pancreas. I had a endoscopy with a specialist who said it was not serious and to have scan done in a year. Should I get a second opinion? I had a sister who died of pancreatic cancer at 50 years old. They did not take a biopsy.

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Definitely get a second opinion for my top cancer center in your area. You need to peace of mind that it’s not cancerous and they should take a biopsy to prove that it isn’t cancerous. Good luck and let us know how it goes.

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