Pancreatic Cancer Group: Introduce yourself and connect with others

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.

@bradthompson88

We followed the advise for questions and just finished doing CT angiogram as well as PET and MRI scans yesterday. Met with the surgeon and the scans came back in our meeting. We went from talking about resection and laparoscopy to see if cancer was in abdominal wall to doing a liver biopsy as cancer had already metastasized to several places in my liver. I am not a candidate for resection now, but the hope is that I am one of the 5% that has the gene that responds to chemo.
As mentioned by one of you, yesterday was a tough day. I want to fight but last night was stuck in the “what does the world look like without me in it?”.

My wife will eventually be a widow. I may not ever see grandchildren. In my small , rural school they won’t be able to replace me as teachers are in such short supply.

It is defeatist, I know, and I won’t sit with these thoughts long, but I have to work through all the feelings that go with this diagnosis.
I’m assuming I have to grieve the life I thought I would have as I transition to the life I will have.

Biopsy tomorrow and hopefully getting a port next week.

I have never cried as much as I did yesterday afternoon…with my wife, with my family as we called all of our immediate family.

Your stories help as I am rereading the fact that some of you are much further in life than the statistics would show. Even the doc said each of us is very unique and wouldn’t give me a “how long I have” estimate. She only said without treatment would be 6 months.

I’m sitting here in bed at 4 am and I can’t sleep anymore. Time is the most importantly thing I have left. I want to spend it fighting this and being with my family as much as I can.

Sorry for the ramble.

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I was in your place in a hotel in Houston after getting a second opinion at MD Anderson. I fell apart. One morning very early, a light woke me up and it hit me! 13% is a very large number-I put on my big girl pants and decided I would prepare for the fight. I found a doctor that would give me goals to fight for, I went to work!
That was 11/2021, I was dx stage 4 with multiple mets all over my liver and tumor in my pancreas. I did NOT quit work, I did NOT quit volunteering but I DID allow myself more quiet time and more time for walking! Get your finances in order (you could get hit by a bus tomorrow😊) then get back to life with some alterations in your schedule.
May God bless you with wisdom and angels in your life💜

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@bradthompson88

We followed the advise for questions and just finished doing CT angiogram as well as PET and MRI scans yesterday. Met with the surgeon and the scans came back in our meeting. We went from talking about resection and laparoscopy to see if cancer was in abdominal wall to doing a liver biopsy as cancer had already metastasized to several places in my liver. I am not a candidate for resection now, but the hope is that I am one of the 5% that has the gene that responds to chemo.
As mentioned by one of you, yesterday was a tough day. I want to fight but last night was stuck in the “what does the world look like without me in it?”.

My wife will eventually be a widow. I may not ever see grandchildren. In my small , rural school they won’t be able to replace me as teachers are in such short supply.

It is defeatist, I know, and I won’t sit with these thoughts long, but I have to work through all the feelings that go with this diagnosis.
I’m assuming I have to grieve the life I thought I would have as I transition to the life I will have.

Biopsy tomorrow and hopefully getting a port next week.

I have never cried as much as I did yesterday afternoon…with my wife, with my family as we called all of our immediate family.

Your stories help as I am rereading the fact that some of you are much further in life than the statistics would show. Even the doc said each of us is very unique and wouldn’t give me a “how long I have” estimate. She only said without treatment would be 6 months.

I’m sitting here in bed at 4 am and I can’t sleep anymore. Time is the most importantly thing I have left. I want to spend it fighting this and being with my family as much as I can.

Sorry for the ramble.

Jump to this post

PS. It hasn’t been easy-the surgeries, clinical trials, chemo-but you have down time then you get back up and get going again, even if only a week at a time.
Pray. Specifically. Stay alert for people that He puts in your life.

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My name is Gracie I am waiting for a doctor to do a biopsy on pancreas to confirm pancreatic cancer have been waiting 2 months cannot find a doctor to do it in my area because these doctors do not participate in Medicare Advantage plans did anyone ever have this problem i need this biopsy please comment

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@bradthompson88

We followed the advise for questions and just finished doing CT angiogram as well as PET and MRI scans yesterday. Met with the surgeon and the scans came back in our meeting. We went from talking about resection and laparoscopy to see if cancer was in abdominal wall to doing a liver biopsy as cancer had already metastasized to several places in my liver. I am not a candidate for resection now, but the hope is that I am one of the 5% that has the gene that responds to chemo.
As mentioned by one of you, yesterday was a tough day. I want to fight but last night was stuck in the “what does the world look like without me in it?”.

My wife will eventually be a widow. I may not ever see grandchildren. In my small , rural school they won’t be able to replace me as teachers are in such short supply.

It is defeatist, I know, and I won’t sit with these thoughts long, but I have to work through all the feelings that go with this diagnosis.
I’m assuming I have to grieve the life I thought I would have as I transition to the life I will have.

Biopsy tomorrow and hopefully getting a port next week.

I have never cried as much as I did yesterday afternoon…with my wife, with my family as we called all of our immediate family.

Your stories help as I am rereading the fact that some of you are much further in life than the statistics would show. Even the doc said each of us is very unique and wouldn’t give me a “how long I have” estimate. She only said without treatment would be 6 months.

I’m sitting here in bed at 4 am and I can’t sleep anymore. Time is the most importantly thing I have left. I want to spend it fighting this and being with my family as much as I can.

Sorry for the ramble.

Jump to this post

My husband was diagnosed last July with Stage 4 Pancreactic Cancer. He had a Distal Pancreatomy and many setbacks after that. He has slowly recovered from the Surgery and believe me, we have both cried a lot. He has never had any treatment since, No Chemo, No Radiation. He is doing pretty well. Tired a lot but we are trying to enjoy every day ! It has been almost a year . Going through this with my Husband is tough. We have been married for 50 Years . Please keep your Spirits up. Miracles happen every Day !

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@suelannon

My husband was diagnosed last July with Stage 4 Pancreactic Cancer. He had a Distal Pancreatomy and many setbacks after that. He has slowly recovered from the Surgery and believe me, we have both cried a lot. He has never had any treatment since, No Chemo, No Radiation. He is doing pretty well. Tired a lot but we are trying to enjoy every day ! It has been almost a year . Going through this with my Husband is tough. We have been married for 50 Years . Please keep your Spirits up. Miracles happen every Day !

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So happy for you and your husband. I had the distal in late 2022, it's been a roller coaster ever since. Have been on 3 different chemo regimens, actually 4. To both ste truly blessed. May I ask what his mutations are in order to give others hope. Thank you!

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@barb1115

My name is Gracie I am waiting for a doctor to do a biopsy on pancreas to confirm pancreatic cancer have been waiting 2 months cannot find a doctor to do it in my area because these doctors do not participate in Medicare Advantage plans did anyone ever have this problem i need this biopsy please comment

Jump to this post

Where do you live? This sounds very unusual. I was diagnosed 11/2021 and had an advantage plan until this year. Never had any problems getting biopsy, surgery, chemo etc

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@bradthompson88

We followed the advise for questions and just finished doing CT angiogram as well as PET and MRI scans yesterday. Met with the surgeon and the scans came back in our meeting. We went from talking about resection and laparoscopy to see if cancer was in abdominal wall to doing a liver biopsy as cancer had already metastasized to several places in my liver. I am not a candidate for resection now, but the hope is that I am one of the 5% that has the gene that responds to chemo.
As mentioned by one of you, yesterday was a tough day. I want to fight but last night was stuck in the “what does the world look like without me in it?”.

My wife will eventually be a widow. I may not ever see grandchildren. In my small , rural school they won’t be able to replace me as teachers are in such short supply.

It is defeatist, I know, and I won’t sit with these thoughts long, but I have to work through all the feelings that go with this diagnosis.
I’m assuming I have to grieve the life I thought I would have as I transition to the life I will have.

Biopsy tomorrow and hopefully getting a port next week.

I have never cried as much as I did yesterday afternoon…with my wife, with my family as we called all of our immediate family.

Your stories help as I am rereading the fact that some of you are much further in life than the statistics would show. Even the doc said each of us is very unique and wouldn’t give me a “how long I have” estimate. She only said without treatment would be 6 months.

I’m sitting here in bed at 4 am and I can’t sleep anymore. Time is the most importantly thing I have left. I want to spend it fighting this and being with my family as much as I can.

Sorry for the ramble.

Jump to this post

Brad -- As you work through this initial shock, things will become clearer. You're in a marathon, focus on the next steps and you'll discover hundreds of things that are still in your control. You're very fortunate to be surrounded by people who love you -- you're not alone in this fight and it sounds like you've got a great medical team. Go get 'em.

Dan

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@gamaryanne

Where do you live? This sounds very unusual. I was diagnosed 11/2021 and had an advantage plan until this year. Never had any problems getting biopsy, surgery, chemo etc

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Yes it was in 2021 but in 2023 doctors and hospitald had the choice of participating in Medicare Advantage Plans I have Aetna Medicare I live in the Buffalo NY area but they opted out

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@demooretucson

Brad -- As you work through this initial shock, things will become clearer. You're in a marathon, focus on the next steps and you'll discover hundreds of things that are still in your control. You're very fortunate to be surrounded by people who love you -- you're not alone in this fight and it sounds like you've got a great medical team. Go get 'em.

Dan

Jump to this post

Thanks, Dan.
It's a marathon for sure, but I want to sprint to the starting gate. I feel like the cancer has one heck of a head start. Waiting to get my test results back so a plan can be made. I really appreciate the support. Today is meeting with a doctor to talk about the port.

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Hi,

I was diagnosed with Pancreatic Cancer in October 2024. I went to my Dr, (at my wife's urging) as I just wasn't feeling quite right. Only symptoms were losing a little weight, feeling full when I ate about 1/2 of what I normally would eat and a sore right back. After some blood tests, a CT was recommended. Had to fight to get the CT scan quickly as they were going to get me scheduled in two months. Results came back with a mass on pancreas head. Biopsy the following week confirmed the cancer. Underwent 3 months of chemo beginning the first week of November, 2024 (fought to get in quickly) at Delnor Cancer Center in Geneva, IL, then Whipple surgery in early March, 2025. I highly recommend going to a surgeon who performs a lot of Whipple surgeries. My surgeon was fantastic! He was affiliated with Northwest Hospital in Arlington Heights, IL. I was in the hospital only 4 days and was diagnosed at Stage 2. I am currently in the middle of my nine post operative chemo. rounds. I have treatment once per week for 3 weeks then I have a week off. My best advice is be your own advocate and move as quickly as you can to receive treatment as soon as possible.

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