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.

199 | @199 | Jun 3 12:29pm

In reply to @bradthompson88 "How do I even know what to ask?" + (show)

1. Ask the stage of your cancer. 2. Where is the cancer? Head, body, tail? 3. Has it metastasized? 4. Is it operable? If so when best to do this. 5. Radiation? 6. Chemotherapy? If so, which drug or drugs. 7. CT scans will be how often? 8. Test for mutations? Like the Guardant test. 9. When the endoscopic procedure was performed, did they have some tissue that could be used in immunotherapy at some point? 9. When should I get a port? (best way to get chemo)
These are just a few questions. Also, if you can, have someone with you because this conversation can be overwhelming. If you don't have someone who can be with you, ask if you can tape so you can replay.

bradthompson88 | @bradthompson88 | Jun 3 11:28am

In reply to @199 "Make a list of questions for your oncology consult. I had so many tests & different..." + (show)

How do I even know what to ask?

199 | @199 | Jun 3 9:40am

In reply to @bradthompson88 "Is my Oncology consult where they tell me what stage of cancer I have? In the..." + (show)

Make a list of questions for your oncology consult. I had so many tests & different folks to talk with before I found out my stage & "prognosis". I had thought I was stage I until the oncologist told me I was stage IV. On 29 June I will be at 3 years after being given 11 months. My "local" oncologist is great!

marienewland | @mnewland99 | Jun 2 8:09am

In reply to @bradthompson88 "Is my Oncology consult where they tell me what stage of cancer I have? In the..." + (show)

Yes. In some cases, like mine, it could be “estimated” before meeting with oncologist, but this rare I think. My cancer was discovered (finally) with an ultrasound; I had been pretty sick for 5 months but Kaiser general practitioner kind of ignored my complaints. After CT and PET and endoscopy the size of tumor was estimated along with the potential for how many lymph nodes might be impacted. If you look online, you may be able to figure out the staging yourself. Of course, what’s really going on May only be figured out once the surgeon opens you up. I never saw an oncologist until I got out of the hospital or following my distal surgery. It’s only because my dad had this disease and it was extremely aggressive and so I wanted to act really quickly and get into surgery following the ultrasound and PET scan results.

marienewland | @mnewland99 | Jun 2 7:04am

In reply to @dalegantous "Anyone have experience with histotripsy for metastases to the liver?" + (show)

Not yet. I do have appt next week with a dr who does it as I’m considering this fairly new procedure. I’ll post following my visit.

bradthompson88 | @bradthompson88 | Jun 2 7:03am

Is my Oncology consult where they tell me what stage of cancer I have? In the endoscopy procedure, they did sample the tissue mass, which is the test result that said I have cancer. Or, do I have to do another procedure to get a sample to get an evaluation of my cancer?

dalegantous | @dalegantous | Jun 2 6:13am

Anyone have experience with histotripsy for metastases to the liver?

bradthompson88 | @bradthompson88 | Jun 2 5:08am

In reply to @joiedevivre "I can tell you it is tough on the wife! If I can joke about it..." + (show)

I have been joking with her about it. The 8 hour drive from Mayo in Rochester to home gives us plenty of time.😊

joiedevivre | @joiedevivre | Jun 2 12:00am

In reply to @bradthompson88 "There is so much I do not know. Cancer has not been in my family history..." + (show)

I can tell you it is tough on the wife! If I can joke about it a little because we do need alot of humour on this cancer journey.

suzanna61 | @suzanna61 | Jun 1 1:02pm

In reply to @bradthompson88 "Hello. My name is Brad and I am a 55 year old band and CTE teacher...." + (show)

Hi Brad,
I hope they have caught it early .. I don’t think they can really tell anything for sure until they do a biopsy . I wish you the best for your upcoming appointment.