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.

mcoplien | @mcoplien | 2 days ago

In reply to @colleenyoung "@mcoplien, it's always frightening when CA19-9 shows higher levels. Have you had further testing? Any news?" + (show)

@colleenyoung
This is our update - My husband's CA 19-9 has continued to rise every 3 months, 186, 380, 886 and now in October it was 4200. His scans had been negative for metastatic disease until October, his stomach lit up on a PET scan. He had an endoscope yesterday, he has a tumor embedded in his stomach. This has been missed on CT scans. We see oncology tomorrow. They will probably start Chemo Gemcitabine and abraxane.

Turkey, Volunteer Mentor | @tomrennie | 2 days ago

In reply to @mcoplien "@colleenyoung This is our update - My husband's CA 19-9 has continued to rise every 3..." + (show)

@mcoplien Good luck with oncology tomorrow. Please let us know how it goes ok?

gamaryanne | @gamaryanne | 1 day ago

In reply to @seizureman "Hi, I currently have symptoms of pancreatic cancer. I will be having a MRI soon and..." + (show)

@seizureman
Hello, i was dx stage 4 in 11/2021. It was eartg shattering news-as i wasnt even sick! 4 years later i am still here. Im not cured but i work, volunteer and do all i can for my family and others. Its a new life for sure but know there are many survivor/thrivers out here.
It diesnt jave yo be your end at the diagnosis if your faith is strong and you perservere to see the best doctors and grt second opinions on everything!

mcoplien | @mcoplien | 1 day ago

In reply to @tomrennie "@mcoplien Good luck with oncology tomorrow. Please let us know how it goes ok?" + (show)

@tomrennie
We saw Oncology today (Madison WI Carbone Cancer Ctr) - They said the area of the stomach was very close to his pancreas - the cancer probably traveled via nerve cells. He starts Chemo next week Gemcitabine and Abraxane. He was pretty clear there is no cure. They are looking for any studies that will work for mike. He might have 2 more years with chemo. he said anymore surgery is very unlikely. Luckily Mike is not very sick right now so should do well with chemo.

tkr66 | @tkr66 | 1 day ago

Hello everyone. My 27-year old son was diagnosed with advanced stage III acinar cell carcinoma. His tumor is outside of the pancreas extending from the tail and rather large. Until the final diagnosis via biopsy and laparoscopy, they went back and forth trying to decide if it was a rare pancreatic cancer or a rare stomach cancer. The first week of July 2025 he was finally diagnosed at Mayo Clinic, Rochester. We are so thankful for this team we have there.

When we were going over options at the beginning, surgery was not an option due to the size and location. The only true option at that time was chemotherapy/immunotherapy in hopes to shrink the tumor since it was taking up his stomach and pushing on his liver and other organs. He started the strongest chemotherapy FOLFIRINOX July 18th. He has had 9 treatments and his tumor has reduced significantly and now surgery is an option!! He is scheduled for an extended distal pancreatectomy, splenectomy, and cholecystectomy. Possible total. It is my understanding that because his tumor is outside of the pancreas and comes out from the tail rather than the head this is why the Whipple is not being considered an option.

I am wondering if there is anyone else my son's age or around 30 or under has been diagnosed with the same rare pancreatic cancer in this group and if so, how are you doing and what treatments did you get.

Colleen Young, Connect Director | @colleenyoung | 1 day ago

In reply to @fdh "@Hi colleenyoung I have been diagnosed with pancreatic cancer in September 2025. Feeling very frustrated with..." + (show)

@fdh, you can submit a request to be seen at Mayo Clinic using this form https://mayocl.in/1mtmR63

You can find the Cost Estimator Tool or request a formal cost estimate here: https://www.mayoclinic.org/billing-insurance/price-estimates

There are several cancer centers of excellence in Canada like Princess Margaret Cancer Centre, CancerCare Manitoba, BC Cancer Agency and more. Has an appointment with the oncologist been scheduled?