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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.

Profile picture for bradthompson88
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)
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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!

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How do I even know what to ask?

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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)
Profile picture for bradthompson88 @bradthompson88

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?

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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!

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2 replies
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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)
Profile picture for bradthompson88 @bradthompson88

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?

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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.

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marienewland | @mnewland99 | Jun 2 7:04am
In reply to @dalegantous "Anyone have experience with histotripsy for metastases to the liver?" + (show)
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Anyone have experience with histotripsy for metastases to the liver?

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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.

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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?

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2 replies
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dalegantous | @dalegantous | Jun 2 6:13am

Anyone have experience with histotripsy for metastases to the liver?

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2 replies
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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)
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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.

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

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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)
Profile picture for bradthompson88 @bradthompson88

There is so much I do not know. Cancer has not been in my family history at all. I have no risk factors as I dont drink or smoke and had my gall bladder removed. It was hard enough when they thought I had chronic pancreatitis compared to acute. Now, having to tell my mother this when she has lost 2 husbands to it, is a lot to take in. We just witnessed my youngest son’s wedding on Friday and there was so much joy. Telling them in a few days will be hard. I haven’t even thought much about fighting it yet. I am not mad or sad. I cry when I think about the pain this will cause for my wife. But, I feel peace. I will post more once I learn what I am up against on June 5.

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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.

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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)
Profile picture for bradthompson88 @bradthompson88

Hello. My name is Brad and I am a 55 year old band and CTE teacher. I was diagnosed with adenocarcinoma on May 27. I should say I read my test results. I am waiting to meet with an oncologist on June 5.

I started with pancreatitis in mid March and had several attacks during that time. I don’t drink or smoke so the doctors here at Mayo looked deeper when they did the endoscope procedure that uses the needle. They found a mass along with a cyst at the neck of my pancreas. According to Dr. Mills, this is something they would not have found for a long while as it didn’t shop up on CT cleans.
I have used Dr. Google in absence of having had my first consultation and the long term prospects are not as good as I wish they were.

Currently I have NO symptoms. No pain, can eat anything I want, am holding my weight(after losing 21 pounds this spring).

I came to this forum to hopefully get some inspiration that some can be cured if this is caught early. I go in for a chest CT tomorrow morning so they can verify that the cancer started in my pancreas. My hope is they caught it super early, but I have been hoping for many things this spring and very few have worked out with this issue.

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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.

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marienewland | @mnewland99 | Jun 1 12:23pm
In reply to @bradthompson88 "Thanks for this! I share your mind set on fighting. I have always been an ask..." + (show)
Profile picture for bradthompson88 @bradthompson88

Thanks for this! I share your mind set on fighting. I have always been an ask for forgiveness rather than permission in my job.
The not knowing has been hard since I first learned about the test. At first, they couldn’t even get me in until August. Now it is up to June 5. My mayo GI doc listened to me about using the blessing about catching this years earlier than they normally would have, so have moved up a few times as cancellations have happened.

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You sound like a very selfless person, Brad. I personally feel that’s an important trait to have as opposed to self-pity. However, at the same time, it’s going to be important to look after yourself too, what you eat now is going to be more important than ever. Exercise like walking or swimming is good for our health and emotions. Stay away from fast food, processed, and greasy food. These will help in your digestion. For me, I made a bucket list of fun things to do with my family and the memories you create of enjoying these good times are what you will leave with your family forever, just in case, but either way you are creating good memories!

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