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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?
Replies to "I'm looking for help in how to think about my situation. I have not discussed it..."
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.
Hello @judithsh and welcome to Mayo Clinic Connect. You pose a very thoughtful question and I see that many members have responded to you based on their experiences. After reading their thoughts, how are you feeling about the choices they have made?
I noticed that while you mentioned not taking any action on this health issue, you ended your post by considering a consultation at JH. Do you think that a consultation at JH will provide you with the information you need to make an informed decision?
I have had IPMN for several years with periodic follow-ups. I have not had much change so I just keep up with the MRIs as needed.
I would hope that you continue sharing about this on Connect. Writing about these decisions is a good way to clarify the issues.
Will you continue posting?
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@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.