1. < Pancreatic Cancer
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.

tls | @tls | 1 day ago
In reply to @siosal "All tests are back. No tumor markers. The largest cyst which is on the tail is..." + (show)
@siosal

All tests are back. No tumor markers. The largest cyst which is on the tail is 2.3cm. There are others on tail and one in middle. Surgeon wants to follow up with mri in 6 mos. Says spleen has lots of blood supply with pancreas and thats the reason it is frequently removed with the tail.
I had EUS FIRST FOLLOWED BY MRI AND OF COURSEW BOTH HAD COORDINATING BLOOD WORK. I HAVE KRAF MUTATION.
(Sorry for caps!).
It’s all precancerous i guess so he chose 6 mo follow up vs 12 mo the radiologist recommended.
I feel like we are just waiting. Which is a bit nerve-wracking. What caused you to make the decision to have surgery.
I have great confidence in the surgeon.

Jump to this post

We have been watching for 3 years. 3 cysts on head. Body and tail shot from a severe case of acute necrotizing pancreatitis. Still making insulin but not making digestive enzymes so have been on Creon for 3 years.

January this year EUS performed with one biopsy on cyst that had nodule. Results came back positive. Since it is early hopeful it is contained. Opted for Total Pancreatotomy since the rest of my pancreas is not working hardly at all and to eliminate a home or more cancerous lesions in the future.

I am prior lung cancer that they also found early. Lung cancer does not move to pancreas, but the reverse can happen. Last March I had to have a second lung surgery to remove all the plural effusion inflammation that was being caused by the pancreas fluid. (Every case is different but make sure they are explaining why they are still good with waiting.) I waited for the 3 years and truly just now need surgery.

Good luck and let me know how your journey progresses.

REPLY
siosal | @siosal | 20 hours ago

Hi
Thank you for writing that. I have high hopes and send you healthy thoughts that all goes well. Its fantastic that you and your team are so on top of everything. It makes such a big difference.
I hope to hear more about your next chapter.
With best wishes.
Beth

REPLY
View MoreView Less
Please sign in or register to post a reply.