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.

denam1 | @denam1 | 4 days ago

In reply to @denam1 "My surgery was actually done at st Joseph Candler. I give them high praise for their..." + (show)

My surgeon was Dr Russell Kirks. Great doctor!

199 | @199 | 3 days ago

My oncologist used to be associated with St. Joe's/Candler's. They have good people there too.

valerina30 | @valerina30 | 3 days ago

Just got diagnosed with mass on pancreas

valerina30 | @valerina30 | 3 days ago

They didn’t actually say it was cancer yet, there’s a mass on my pancreas a they want me to get it biopsy. I’m assuming this is standard procedure?

roman60 | @roman60 | 3 days ago

Just got diagnosed with acinar carcinoma. The tumor has not metastasized thank goodness, but still not a candidate for surgery. Starting chemo next week, Folfirinox. Hoping for the best and looking for a second opinion and possibly a trial.

joiedevivre | @joiedevivre | 2 days ago

In reply to @valerina30 "They didn’t actually say it was cancer yet, there’s a mass on my pancreas a they..." + (show)

Not standard. Generally they do a PET scan with contrast first. Just ask more questions if you have not already done a PET scan. Our surgeon told us after the PET scan that it was likely cancerous and he did not think it was necessary to poke around the pancreas to get as sample for testing. The tumour was sent for biopsy after surgery to check for cancer and for gene mutation.

delores508 | @delores508 | 2 days ago

I have a precancerous pancreatic cyst discovered incidentally when screening for another complaint. I have undergone two Endoscopic Ultrasounds, but due to my anatomical abnormality, no biopsy was performed. ( I think that a prior hiatal surgery rearranged my abdomen) Because of my advanced age, I am not a candidate for the Whipple surgery. Thus, I am currently in a surveillance situation having scans every six months. The size of the cyst is a critical concern; however, the location of the cyst preclude removal of the cyst without the Whipple procedure. What other options do I have? Anyone with a similar experience?

valerina30 | @valerina30 | 2 days ago

In reply to @joiedevivre "Not standard. Generally they do a PET scan with contrast first. Just ask more questions if..." + (show)

So they just took the tumor out? Did it turn out to be cancer? Did you have pain prior to it getting removed? I don’t know what to do or who to see

joiedevivre | @joiedevivre | 1 day ago

Tumour was removed and it was cancerous. You see a surgeon and an oncologist - both specializing in the pancreas, liver and digestive system. Perhaps you can let people in this forum know which area you live in and people may have suggestions.