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Monitoring a Pancreatic Cyst?
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.
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Pancreatic cysts such as IPMN’s are managed by a surgical oncologist. Yale-New Haven Medical Center has a cyst management clinic.
https://www.ynhh.org/services/digestive-health/pancreatic-cyst-clinic
My cyst was found on routine surveillance six years after having Whipple surgery (2012) and recovery from stage IV disease to the liver. Because of this, I sought a couple of additional opinions from surgeons who had expertise in cyst management at MSKCC, Columbia Presbyterian and PennMedicine. I have surveillance by MRI with contrast every six months and if any changes are noted at the next surveillance, an EUS may be added.
@rwr, Thank you so much for sharing your experience and knowledge. I managed to find the Yale clinic on my own online last night and captured an appointment with my primary care doctor for tomorrow morning.
I like her and trust her and believe she will look after this in the way it needs looking after. I will ask about that clinic and follow up. You probably know how helpful it is to have someone who's been down a similar road in the same place and I can't tell you how much I appreciate it! I wish you the best in the future,
@yellowdoggirl1
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1 ReactionI posted some info in this thread https://connect.mayoclinic.org/discussion/ipmn-with-symptoms/ a few days ago that might also be useful here. Forgive the duplication if you've already seen it.
FWIW, MD Anderson just updated their pancreatic cancer screening recommendations here:
https://www.mdanderson.org/content/dam/mdanderson/documents/for-physicians/algorithms/screening/screening-pancreatic-web-algorithm.pdf
On page 2 it shows their high-risk criteria and the list of mutations considered risk factors.
There is also set of Fukuoka Guidelines / Classifications for managing IPMNs. Last update I could find was 2017, discussed here:
https://www.sciencedirect.com/science/article/abs/pii/S1424390317305161?via%3Dihub
and with a nice flow chart here:
https://www.endoscopy-campus.com/en/classifications/impn-fukuoka-classification-guidelines/
I also have a 4 cm cyst as well as smaller cysts in my pancreas- I received 2 MRI’s with unchanged results. At Northwestern Hosp they do not seem concerned. However, I will be doing further research and testing.
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1 ReactionJust sharing with the Group - hopefully not ‘cursing’ myself…
My followup scan at Jacksonville Mayo showed no signs of growth and was considered ‘stable’. My Rochester Mayo team now suggested an annual followup - however my next one I think I will have in late October @ Rochester (1 hour Drive from St. Paul vs. 5 hour drive to Jacksonville/Ft. Myers).
Firstly I want to thank God as it seems He has further plans for me. Secondly I want to thank ALL of my unseen friends on this site for Prayers and Support. It means so much to me, that I can not express in words.
Please trust in our Lord that He only has the best intentions for you - no matter the outcome. As one of my favorite parts in ‘The Chosen’,…”get used to different”. Trust Him and not the culture of our World today
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7 ReactionsSo so very true. And well said.
YES!
My Pan Can adventure has increased my trust in God as I understand God (Thanks 12 Step Programmes)
I am grateful to God for my sense peace with whatever the future brings.
I’ve had hundreds of people praying for me. Before I was diagnosed I had no idea how many people care about me, and how many love me. This has been one of the great blessings of my cancer adventure.
Finally I have come to believe that because of all of the prayers I have come to know and understand the nature of human healing. Prior to cancer I saw only physical healing. Today I recognize that there are three types of healing:
Physical.. cancer gone and my body healed.
Emotional… cancer no longer controls my emotions, how I feel about myself, my tumor, and my future. Fear and uncertainty no longer have power in my life. Peace of mind can flourish.
Spiritual…. Trust that no matter the outcome all will be well.
That God, as I understand God, cares about me, loves me, and only wants good for me, is in control.
I’ve come to understand that of the three Spiritual healing the most important. It makes the greatest impact in my day to day life and gives me a fearless approach to my future.
Due to the gift of Spiritual healing everything has changed in my battle with my tumor. No matter the outcome I will be a victor. I’m blessed.
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1 ReactionYou r not alone. I am post liver transplant and they found a 2cm cyst. My dr said we will monitor it if it grows, there's a problem. Cysts are either water filled or not. Good radiologist would know difference. Took me a few yrsto stop worrying. Keep up ur scans!!
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3 ReactionsI too have pancreatic cyst found in 2016. It is drop bigger now 2cm so they r monitoring. I du US, MRI. Now they can't tell its impingement amount on bile ducts. May I ask how large a cyst?
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1 ReactionI too had a cyst and was told after all the diagnostic tests that it was a 40% cancerous and 60% non cancer. Had whipple surgery 3 weeks later and was stage 1A cancer with clean margins and lymph nodes but poorly differentiated. Made decision for surveillance and will get CT scan next week which will be 26 months since surgery so we shall see. Last scan was 7 months ago and clean.
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