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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.

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Mentor
Turkey, Volunteer Mentor | @tomrennie | Apr 27 9:59am
In reply to @lexaolexa1 "I did go back and review the reports and found these: 1. "Pet Scan Collected on..." + (show)
Profile picture for lexaolexa1 @lexaolexa1

I did go back and review the reports and found these:
1. "Pet Scan Collected on Mar 12, 2026
IMPRESSION: New focus of intense FDG uptake in the anterior midline abdomen, possibly metastatic.
and this from the last ct scan performed:
2. March 3, 2026 FINDINGS: Comparison to November 2025. There is increased soft tissue prominence around the superior mesenteric artery with progressive constriction of the superior mesenteric vein with only pinpoint residual patency at one level. There is engorgement of the more caudal mesenteric branches because of this high-grade stenosis."
Sorry, an exact measurement of the area wasn't found.

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@lexaolexa1 Your doctors are all part of the same team at the same hospital correct? You get a new ct scan next week? Which doctor is your ct scan review appointment with?

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lexaolexa1 | @lexaolexa1 | Apr 27 12:56am

I did go back and review the reports and found these:
1. "Pet Scan Collected on Mar 12, 2026
IMPRESSION: New focus of intense FDG uptake in the anterior midline abdomen, possibly metastatic.
and this from the last ct scan performed:
2. March 3, 2026 FINDINGS: Comparison to November 2025. There is increased soft tissue prominence around the superior mesenteric artery with progressive constriction of the superior mesenteric vein with only pinpoint residual patency at one level. There is engorgement of the more caudal mesenteric branches because of this high-grade stenosis."
Sorry, an exact measurement of the area wasn't found.

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1 reply
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lexaolexa1 | @lexaolexa1 | Apr 27 12:20am
In reply to @tomrennie "@lexaolexa1 has the mass been measured? Have you read the scan reports? Have they presented a..." + (show)
Profile picture for Turkey, Volunteer Mentor @tomrennie

@lexaolexa1 has the mass been measured? Have you read the scan reports? Have they presented a treatment plan moving forward as of yet or is that what the next appointment is for? I still feel like something is missing.

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@tomrennie Yes, I have read the scan reports, I'm scheduled for another ct scan and followup with the oncologist the first full week in May. If I sound like I'm confused, it's because I am. I received one plan for a course of radiation treatment only to find that it was cancelled. My original Whipple surgeon doesn't want to biopsy the area because he says that it's too risky. My oncologist reports that he doesn't want to treat me because of the negative blood tests and, apparently, doesn't want to 'overtreat' me because my situation may be hopeless.
I will go back through the results of the recent ct and pet scans to attempt to locate a measurement of the size of the area that the shadow lies in and report back.
Thank you.

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Mentor
Turkey, Volunteer Mentor | @tomrennie | Apr 26 3:12pm
In reply to @gvk911 "@gvk911 Hi Tom, I have been away from here for a while. My brother traveled here..." + (show)
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@gvk911
Hi Tom,
I have been away from here for a while. My brother traveled here for a visit. Although we wanted to golf, we could not. Well, we did get out for a couple of 9 holes, but we wanted to play in the senior men's. Anyway, it was a great visit.
Stephen came here to be with me for my first chemo treatment. It went well in that there were no terrible side effects. Who knows what is really happening inside. Did have a consult with a nutritionist and she told me that the main goal is to get as much protein into me as possible. So I have enhanced smoothies (add protein powder). It actually tastes pretty good.
My cancer is supposed to be inoperable and fast growing so I do not know what to expect. I do see my GP on Monday. We will see what he has to say.
I hope that you are as well as you can be. Take care, Glenn

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@gvk911 It is great that you got to spend time with your brother. Being around family and friends help. At this point, it seems the plan is to stick with the chemo until further tests/scans evaluate its effectiveness correct? Protein smoothies can be quite yummy and a great way to get the extra protein. I make one most mornings.

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Mentor
Turkey, Volunteer Mentor | @tomrennie | Apr 26 2:59pm
In reply to @lexaolexa1 "Thank you for responding. I am feeling well at the moment. Yes, the tissue growth in..." + (show)
Profile picture for lexaolexa1 @lexaolexa1

Thank you for responding. I am feeling well at the moment.
Yes, the tissue growth in proximity to the SMA and SMV is confusing to my physicians because my CA 19-9 and Signatera are negative for pancreatic cancer at the moment. They say, statistically, the tissue growth is a recurrence of my original tumor, but without CA-19-9 or Signatera confirmation, they don't have reason enough to biopsy.
To answer your question, there was no suspicious tissue in that area in Jan. of 25, but in the next ct scan done in the spring of '25, it was beginning to accumulate in the area between the SMA and SMV. Now, the tissue surrounds them both.

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@lexaolexa1 has the mass been measured? Have you read the scan reports? Have they presented a treatment plan moving forward as of yet or is that what the next appointment is for? I still feel like something is missing.

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1 reply
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yellie | @yellie | Apr 26 1:45pm

No. Fortunately the coupon is good for one year and was told it’s easy to renew. No limit for duration.

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yellie | @yellie | Apr 26 1:43pm

No. Coupon is good for one year and was told it’s easy to renew. No limit.

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casey1959 | @casey1959 | Apr 26 10:15am
In reply to @yellie "@casey1959 Hi. My husband was prescribed Creon post operative. He did need it initially and manufacturer..." + (show)
Profile picture for yellie @yellie

@casey1959 Hi. My husband was prescribed Creon post operative. He did need it initially and manufacturer coupon helped cover it with very little out of pocket cost and was able to get reimbursed for the first script which we had to pay for. He initially needed it post op due to weight loss/ stool frequency and diarrhea after his surgery but was able to reduce the amount needed with meals after a few weeks and stopped altogether around three months after his surgery. He has maintained his weight, tolerated foods and having more regular BM with out it. He saw his surgeon at regular intervals who helped with those changes. The Creon web site has a lot of helpful information.

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@yellie Another question please. Did you require a new coupon for each refill? Ty

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lexaolexa1 | @lexaolexa1 | Apr 25 2:37pm

Thank you for responding. I am feeling well at the moment.
Yes, the tissue growth in proximity to the SMA and SMV is confusing to my physicians because my CA 19-9 and Signatera are negative for pancreatic cancer at the moment. They say, statistically, the tissue growth is a recurrence of my original tumor, but without CA-19-9 or Signatera confirmation, they don't have reason enough to biopsy.
To answer your question, there was no suspicious tissue in that area in Jan. of 25, but in the next ct scan done in the spring of '25, it was beginning to accumulate in the area between the SMA and SMV. Now, the tissue surrounds them both.

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1 reply
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lexaolexa1 | @lexaolexa1 | Apr 25 2:24pm
In reply to @tomrennie "@lexaolexa1 Hi. I see that this is your first time commenting here. I want to welcome..." + (show)
Profile picture for Turkey, Volunteer Mentor @tomrennie

@lexaolexa1 Hi. I see that this is your first time commenting here. I want to welcome you to Mayo Connect. Before we discuss possible questions, how are you feeling? Who described the situation as difficult and unresectable? How much has the mass grown in the past year? Why did the oncologist say that he didn't want to treat you? I am somewhat confused. Thanks.

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@tomrennie

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