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.

Hi
I was dx for stage 3 borderline resectable pancreatic in April ‘22
Did chemo , shark a bit but still too close to smv told no longer operable did mri guided proton therapy the last week of sept. Now possible surgery again. Im not sure now whether to have it .. any advice

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I was diagnosed with pancreatic cancer in Feb 2021 and had a robotic pancreatectomy. I then had 12 sessions of folfirinox. I was NED after surgery and have remained so since. I go for a quarterly scan next month. I usually get nervously on line about this time. I am very grateful for my condition so far. My cancer was 2B. I discovered it by questioning a hospitalist about my high Lipase level. I was in the hospital for treatment of a UTI. He said he had examined a scan from 2months prior when I had sepsis and it was clear. He was insulted by my questions. Went to my PCP and she redid the Lipase test. It was still high. Went through an MRI, a scan and endoscopy where a stage 1 cancer was found. Between then and the surgery, one lymph node opened. 21 were removed. The tumor was also on a nerve. So far - so good………..

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@luettersc

Hi, I'm Carol and I do not have pancreatic cancer. I have had 4 FDR that has died of the disease. I'm being proactive as much as I can to not get diagnosed with this horrible cancer. I'm currently going to an amazing cancer team that has me do a EUS once a year to check my digestive tract. I currently have 8 cysts in my pancreas. My doctors are not concerned with the cysts now, but are keeping a close eye on me.

I'm looking forward to sharing with all of you in this group!
Thank You!

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What is FDR? I have some cysts on my pancreas. My doctor said they are okay. How do they know they are okay?

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@rexsan20

What is FDR? I have some cysts on my pancreas. My doctor said they are okay. How do they know they are okay?

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Asking the same. I was looking for information on cysts, as I have 3( one supposedly burst or deflated) and they are called IPMN. They were discovered when I had a lung scan that discovered a nodule on my liver. Then I had an MRI of the liver, that determined that the nodule was nothing, but they found the cyst on my pancreas. Then they did an endoscopic biopsy that determined they were not malignant.
I have an MRI with contrast every year as a follow up. The Dr told me they will eventually become cancerous but hopefully not until my nineties.

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@knolmom

Asking the same. I was looking for information on cysts, as I have 3( one supposedly burst or deflated) and they are called IPMN. They were discovered when I had a lung scan that discovered a nodule on my liver. Then I had an MRI of the liver, that determined that the nodule was nothing, but they found the cyst on my pancreas. Then they did an endoscopic biopsy that determined they were not malignant.
I have an MRI with contrast every year as a follow up. The Dr told me they will eventually become cancerous but hopefully not until my nineties.

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My journey has been similar. I went for an ultrasound in 2021 to explore why I was losing weight without trying. A nodule was found on my liver, so an MRI was recommended. The MRI showed the nodule to be insignificant, but a cyst showed up on the pancreas, thought to be an IPMN in the main duct. I had the EUS and it did not show any malignancy. Doctors decided to review in a year. In 2022, the MRI revealed that the cyst grew just slightly, but the duct around the cyst had dilated noticeably. So, I had a distal pancreatectomy in July 2022, and cancer was found in the vicinity of the IPMN, but had not spread beyond the pancreas. I am a Stage 1b pancreatic cancer patient now, on my third round of chemo. I think those IPMNs can be tricky.

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@knolmom

Asking the same. I was looking for information on cysts, as I have 3( one supposedly burst or deflated) and they are called IPMN. They were discovered when I had a lung scan that discovered a nodule on my liver. Then I had an MRI of the liver, that determined that the nodule was nothing, but they found the cyst on my pancreas. Then they did an endoscopic biopsy that determined they were not malignant.
I have an MRI with contrast every year as a follow up. The Dr told me they will eventually become cancerous but hopefully not until my nineties.

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Thank you so
Much for your response. I do have an MRI every 6 months or a year. I’m just so worried about the cysts. What do you suggest to check on the cysts closer to see? I have read about the different kinds of cysts. I just do not want to find out later that I’m in stage 3 or 4. The more you read about PC most people don’t know until later stages. I’m 58 years old and just want to make sure about this situation. Doctors are fine but they get so busy and sometimes not answering the questions.
Thank you!!!!!

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@rexsan20

What is FDR? I have some cysts on my pancreas. My doctor said they are okay. How do they know they are okay?

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FDR= First Degree Relative

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@ken240

My journey has been similar. I went for an ultrasound in 2021 to explore why I was losing weight without trying. A nodule was found on my liver, so an MRI was recommended. The MRI showed the nodule to be insignificant, but a cyst showed up on the pancreas, thought to be an IPMN in the main duct. I had the EUS and it did not show any malignancy. Doctors decided to review in a year. In 2022, the MRI revealed that the cyst grew just slightly, but the duct around the cyst had dilated noticeably. So, I had a distal pancreatectomy in July 2022, and cancer was found in the vicinity of the IPMN, but had not spread beyond the pancreas. I am a Stage 1b pancreatic cancer patient now, on my third round of chemo. I think those IPMNs can be tricky.

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what test found the nodule on the liver?

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@luettersc

Hi, I'm Carol and I do not have pancreatic cancer. I have had 4 FDR that has died of the disease. I'm being proactive as much as I can to not get diagnosed with this horrible cancer. I'm currently going to an amazing cancer team that has me do a EUS once a year to check my digestive tract. I currently have 8 cysts in my pancreas. My doctors are not concerned with the cysts now, but are keeping a close eye on me.

I'm looking forward to sharing with all of you in this group!
Thank You!

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So the EUS is different from an endoscopy........... Did the EUS see the cyst or how how does the EUS check on digestive tract?

Sorry for the questions just this would help me.

Thank you so much1

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@rexsan20

what test found the nodule on the liver?

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The ultrasound turned up the liver nodule, which led to the recommendation for the MRI.

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