Pancreatic Cancer Group: Introduce yourself and connect with others

Welcome to the Pancreatic Cancer group on Mayo Clinic Connect.
This is a welcoming, safe place where you can meet people living with pancreatic cancer or caring for someone with pancreatic cancer. Let’s learn from each other and share stories about living well with cancer, coping with the challenges and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by fellow members and volunteer patient Mentors, when you post to this group. Learn more about Moderators and Volunteer Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.

Pull up a chair. Let's start with introductions.

When were you diagnosed with pancreatic cancer? What treatments have you had? How are you doing?

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

@schufly

Hi all. Was recently diagnosed with stage iv pancreatic cancer. 6 liver mets. I have a rare (2.5 %) form called " uncinate process ". From the little that I can find, it is that hook on the end of the head of the pancreas, with not a good prognosis. Any thoughts would greatly be appreciated.

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As far as I know, "uncinate process" is an anatomical term, rather than a "form" of pancreatic cancer. The uncinate process is part of the head of the pancreas.
See the John Hopkins website for "Pancreas Basics" that includes a definition and illustration of the uncinate process. https://pathology.jhu.edu/pancreas/basics
Perhaps your your diagnosis of pancreatic cancer simply references the uncinate process as the anatomical location of your tumor.
If you can access your physician's clinical notes or follow up a phone call to his/her office you can get clarification.
Best wishes to you.

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@schufly

Hi all. Was recently diagnosed with stage iv pancreatic cancer. 6 liver mets. I have a rare (2.5 %) form called " uncinate process ". From the little that I can find, it is that hook on the end of the head of the pancreas, with not a good prognosis. Any thoughts would greatly be appreciated.

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Welcome schufly!
It’s been awhile since I’ve had anatomy so I had to look up your term of unicate process and I see what you are referring to as far as that be a delicate location for pancreatic cancer. I also read that the CA19-9 blood test is a good marker for it so be sure you are keeping track of that. I also tried to do a search of this site using “unicate process”, but was unsuccessful in finding anything, but maybe others might have better luck. The most important advice I can give to you is to go to a “center of excellence” for pancreatic cancer. What state do you live in?

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@mnewland99

Welcome schufly!
It’s been awhile since I’ve had anatomy so I had to look up your term of unicate process and I see what you are referring to as far as that be a delicate location for pancreatic cancer. I also read that the CA19-9 blood test is a good marker for it so be sure you are keeping track of that. I also tried to do a search of this site using “unicate process”, but was unsuccessful in finding anything, but maybe others might have better luck. The most important advice I can give to you is to go to a “center of excellence” for pancreatic cancer. What state do you live in?

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Minor typo? ... unicate --> uncinate
Search returns 10 hits:
https://connect.mayoclinic.org/group/pancreatic-cancer/?search=uncinate#discussion-listview
🙂

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I live on Long Island and receive my treatments at MSKCC on Long Island. It is ONLY a treatment center. Is it a center of excellence since it is related to Sloan in the city ? I do like my doctor. Seems very much on top of things.

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I had a Whipple in 2013, needed no chemo been doing great since, my suggestion is find a doctor that will do the Whipple on you and get it done. The Whipple procedure seems to be very good and stopping pancreatic cancer if you catch it early enough! I’ve had friends that were trying to get the Whipple but the doctors wanted to play around with there liver and other things give them all kinds of chemo which made them weak. They ended up dying and not being able to have the Whipple get a doctor that will do the Whipple And get it done !!

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My name is Zee. I was diagnosed on June 19, 2024. I did 12 rounds of chemo. Had laparoscopic surgery to see if I qualified for the Whipple surgery. Tiny cancerous spots were found on the lining of my abdomen. I didn’t qualify for immunotherapy. Cancer marker is to low. Waiting to start chemo again

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My name is Julius Butu. I am a Nigerian and live in Abuja
My younger brother (58) had been diagnosed with pancreas tumor.
Where can I receive the best medical attention in US or Europe?

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@silver182

I had a Whipple in 2013, needed no chemo been doing great since, my suggestion is find a doctor that will do the Whipple on you and get it done. The Whipple procedure seems to be very good and stopping pancreatic cancer if you catch it early enough! I’ve had friends that were trying to get the Whipple but the doctors wanted to play around with there liver and other things give them all kinds of chemo which made them weak. They ended up dying and not being able to have the Whipple get a doctor that will do the Whipple And get it done !!

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@silver182 I face more big decisions in 4 weeks. I'm scheduled for a Whipple next month (two previous surgery dates in January and February postponed due due elevated CA 19.9 levels). If you don't mind sharing, I have a couple of questions for you.
1. At the time of your Whipple, what was the type, location and Stage of your cancer?
2. If you can recall, what was your CA 19.9 value just prior to surgery?
3. Where did you get your Whipple?
Thanks in advance. It's refreshing to hear a bit of your history and your excellent outcome.
Good on ya.

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@garden4me

My name is Zee. I was diagnosed on June 19, 2024. I did 12 rounds of chemo. Had laparoscopic surgery to see if I qualified for the Whipple surgery. Tiny cancerous spots were found on the lining of my abdomen. I didn’t qualify for immunotherapy. Cancer marker is to low. Waiting to start chemo again

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Hello @garden4me and welcome to Mayo Connect. I appreciate you sharing your experience with pancreatic cancer.

I see that you are going to begin chemo again. How are you feeling? Is the resumption of chemo a result of new findings on a scan? Will you post again and share more about your journey with pancreatic cancer?

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@julius6

My name is Julius Butu. I am a Nigerian and live in Abuja
My younger brother (58) had been diagnosed with pancreas tumor.
Where can I receive the best medical attention in US or Europe?

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In Europe, the University of Heidelberg Medical Center has a renowned pancreas program.
https://www.epz-heidelberg.de/en/

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