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Moderator

Pancreatic Cancer Group: Introduce yourself and connect with others

Posted by Colleen Young, Connect Director @colleenyoung, Dec 3, 2019

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.

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samsonunchained | @samsonunchained | Dec 11 11:37am

I am waiting for information from several drs regarding a needle biopsy of a “cyst “ on the tail of my pancreas. It seems the cyst has grown since last year. My results have been passed to everyone with no one willing to talk to me. The results were passed to someone at Mass General and i was told that the nurse relaying the interpretation of the results could only speak to a nurse who was licensed in both NH and Mass. WTF? The CEA is 5202. Everything I see online is either not clear or bad. Still trying to talk to my “care givers”.

REPLY
1 reply
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samsonunchained | @samsonunchained | Dec 12 12:43pm
In reply to @samsonunchained "I am waiting for information from several drs regarding a needle biopsy of a “cyst “..." + (show)
Profile picture for samsonunchained @samsonunchained

I am waiting for information from several drs regarding a needle biopsy of a “cyst “ on the tail of my pancreas. It seems the cyst has grown since last year. My results have been passed to everyone with no one willing to talk to me. The results were passed to someone at Mass General and i was told that the nurse relaying the interpretation of the results could only speak to a nurse who was licensed in both NH and Mass. WTF? The CEA is 5202. Everything I see online is either not clear or bad. Still trying to talk to my “care givers”.

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Thanx. I got on touch with the surgeon who did the biopsy. She is a really
good person and answered my questions fir as long as i wanted to talk. She
said she was sorry about not getting to me sooner. She said she has been
busy in the or doing one procedure after another.

REPLY
1 reply
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Moderator
Colleen Young, Connect Director | @colleenyoung | 3 days ago
In reply to @carlos322 "Hi! I’m Carl, diagnosed 11/11/24. Finished folfirinox, rt and Whipple-surgery 6/25. Now in surveillance. Feeling pretty..." + (show)
Profile picture for carlos322 @carlos322

Hi! I’m Carl, diagnosed 11/11/24. Finished folfirinox, rt and Whipple-surgery 6/25. Now in surveillance. Feeling pretty well, getting scanned every 3 months now, a source of recurrent anxiety. Considering all, I feel fortunate but cancer thoughts take over a lot of one’s life.

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@carlos322, I'm glad you're feeling pretty good after completing treatment for pancreatic cancer. Despite finishing treatments, thoughts about cancer, anxiety and discovering life after/with cancer takes time. Thoughts about recurrence are never far away. And then those 3 month follow-ups...did you know that there's actually a name for the anxiety you feel? Some call it scanxiety.

- Scanxiety tips and tricks https://connect.mayoclinic.org/discussion/scanxiety-tips-and-tricks/

You might be interested in some of the discussions in the Cancer: Managing Symptoms support group like this one:
- Emotional health after cancer: How are you doing really?https://connect.mayoclinic.org/discussion/emotional-health-after-cancer/

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Moderator
Colleen Young, Connect Director | @colleenyoung | 11 hours ago
In reply to @piedmontsteve "Hi everyone! It’s Steve from Sunset Beach, NC. I was diagnosed with Stage 4 Pancreatic Cancer..." + (show)
Profile picture for piedmontsteve @piedmontsteve

Hi everyone! It’s Steve from Sunset Beach, NC. I was diagnosed with Stage 4 Pancreatic Cancer in June of 2021. I did one year of aggressive chemo and my response was so good that I was able to have a distal pancreatectomy at Duke Cancer Center in September of 2022. I was off chemo with clear scans for a year when the cancer returned to my peritoneal cavity. I’ve been back on chemo since October of 2023. I was at Mayo last week to have some tests and a diagnostic laparoscopy to help determine next steps.
I’m hoping for a long chemo holiday.

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@piedmontsteve, how did your appointment go? What did you and your Mayo team determine to be the next steps?

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Moderator
Colleen Young, Connect Director | @colleenyoung | 6 hours ago
In reply to @samsonunchained "Thanx. I got on touch with the surgeon who did the biopsy. She is a really..." + (show)
Profile picture for samsonunchained @samsonunchained

Thanx. I got on touch with the surgeon who did the biopsy. She is a really
good person and answered my questions fir as long as i wanted to talk. She
said she was sorry about not getting to me sooner. She said she has been
busy in the or doing one procedure after another.

Jump to this post

@samsonunchained, have you have any update on your biopsy? What did you find out?

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