1. < Neuroendocrine Tumors (NETs)

Just diagnosed with pancreatic NET stage 1

Posted by kt348 @kt348, Oct 17, 2022

I’m a 64 year old woman, I’ve have colon issues for decades among other issues. They found my tumor on a CT scan, I don’t think I have any symptoms because of all my other issues in play. Anyway, I’m devastated! It’s on the tail portion of my pancreas, 1c in size, well sectioned, slow growing. I had biopsy done with scope to confirm cancer. My oncologist surgeon had 2 options, wait 6 months and repeat CT so we had a baseline and check for any changes or surgery to remove it, which the tail of pancreas is removed and also remove spleen, tube running (for temp drainage) out of my nose. 4 immunization shots followed by 2 more. So I opted for waiting the 6 months. I’m so confused and scared it’s going to move to another area. If anyone has had this same issue please message me back with your decision. It’s been a month since I found out and I’m a wreck! Thanks

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

jaxterdb | @jaxterdb | Apr 6 9:49am

Hello! I had an NET show up on a CT scan that had been done in November, 2007 because of recurrent pain on my right side. The doctor called next the next day and told me that nothing on the CT showed anything that would cause the pain. However he said it showed a mass in the tail of my pancreas. They did a biopsy and told me it was malignant. I was given an appoint meant with a specialist for about a week later. In the meantime I started Googling pancreatic cancer and found out that I had a 5% chance of surviving the next 5 years. I assumed I was going to be dead in less than 5 years.

I didn’t have much hope till I saw the specialist. He immediately reassured me that if you had to have pancreatic cancer this was the type to have. He said the tumor was 2.5 centimeters and they generally didn’t start to spread till about 3 centimeters. I was scheduled for surgery for Friday, January 11, 2008. He told me that it would take about 4 hours and I should be able to return to work the following Monday.

The surgery was more complicated than they thought, because of a blood vessel, and lasted just over 10 hours and they took my spleen as well. I was put in ICU and Saturday was moved to a step down room on the same floor. But, unfortunately, I went into total respiratory arrest that evening. I spent the next week in ICU for a nasty case of double pneumonia.

But the surgery was successful and over 16 years later, I’m still hanging in there. I would recommend you get a second opinion on surgery. I would think it would be better to get the tumor out while it’s still small.

But the main thing is to not worry too much. You’re lucky that, like me, it was caught early, before there were symptoms.

Good luck!

REPLY
2 replies
jaxterdb | @jaxterdb | Apr 6 9:52am
In reply to @jaxterdb "Hello! I had an NET show up on a CT scan that had been done in..." + (show)
@jaxterdb

Hello! I had an NET show up on a CT scan that had been done in November, 2007 because of recurrent pain on my right side. The doctor called next the next day and told me that nothing on the CT showed anything that would cause the pain. However he said it showed a mass in the tail of my pancreas. They did a biopsy and told me it was malignant. I was given an appoint meant with a specialist for about a week later. In the meantime I started Googling pancreatic cancer and found out that I had a 5% chance of surviving the next 5 years. I assumed I was going to be dead in less than 5 years.

I didn’t have much hope till I saw the specialist. He immediately reassured me that if you had to have pancreatic cancer this was the type to have. He said the tumor was 2.5 centimeters and they generally didn’t start to spread till about 3 centimeters. I was scheduled for surgery for Friday, January 11, 2008. He told me that it would take about 4 hours and I should be able to return to work the following Monday.

The surgery was more complicated than they thought, because of a blood vessel, and lasted just over 10 hours and they took my spleen as well. I was put in ICU and Saturday was moved to a step down room on the same floor. But, unfortunately, I went into total respiratory arrest that evening. I spent the next week in ICU for a nasty case of double pneumonia.

But the surgery was successful and over 16 years later, I’m still hanging in there. I would recommend you get a second opinion on surgery. I would think it would be better to get the tumor out while it’s still small.

But the main thing is to not worry too much. You’re lucky that, like me, it was caught early, before there were symptoms.

Good luck!

Jump to this post

P.S. I am a 73 year old male.

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Apr 6 11:43am
In reply to @jaxterdb "Hello! I had an NET show up on a CT scan that had been done in..." + (show)
@jaxterdb

Hello! I had an NET show up on a CT scan that had been done in November, 2007 because of recurrent pain on my right side. The doctor called next the next day and told me that nothing on the CT showed anything that would cause the pain. However he said it showed a mass in the tail of my pancreas. They did a biopsy and told me it was malignant. I was given an appoint meant with a specialist for about a week later. In the meantime I started Googling pancreatic cancer and found out that I had a 5% chance of surviving the next 5 years. I assumed I was going to be dead in less than 5 years.

I didn’t have much hope till I saw the specialist. He immediately reassured me that if you had to have pancreatic cancer this was the type to have. He said the tumor was 2.5 centimeters and they generally didn’t start to spread till about 3 centimeters. I was scheduled for surgery for Friday, January 11, 2008. He told me that it would take about 4 hours and I should be able to return to work the following Monday.

The surgery was more complicated than they thought, because of a blood vessel, and lasted just over 10 hours and they took my spleen as well. I was put in ICU and Saturday was moved to a step down room on the same floor. But, unfortunately, I went into total respiratory arrest that evening. I spent the next week in ICU for a nasty case of double pneumonia.

But the surgery was successful and over 16 years later, I’m still hanging in there. I would recommend you get a second opinion on surgery. I would think it would be better to get the tumor out while it’s still small.

But the main thing is to not worry too much. You’re lucky that, like me, it was caught early, before there were symptoms.

Good luck!

Jump to this post

Hello @jaxterdb and welcome to Mayo Connect. I appreciate your encouraging post about your experience with a pNET. You echo what many of us have found: a second opinion is really important. As you have experienced, it really makes a difference.

Since your surgery was 16 years ago. What did you find you needed after surgery? Did you follow a specific diet plan? Were you given any medications to help with digestion? How frequently do you have follow up scans?

REPLY
jaxterdb | @jaxterdb | Apr 6 1:12pm

Hi. I was very lucky. I didn’t have to have chemo or radiation. I just had CT scans (pelvis, abdomen and chest) every 6 months for a few years and then annually after. I did develop a pseudo cyst that had to be drained, but is was a pretty simple procedure. If you are familiar with Randy Pauch, I had the same doctor, at UPMC, in Pittsburgh. I do take two 36,000 unit Creon capsules with every meal. It does help but I still have some issues. The Creon is very expensive but I’m lucky that I get it from the VA as I am a disabled veteran.

Since this surgery, I’ve had surgeries for prostate cancer (2010), lung cancer (2019) and kidney cancer, last September. These were all primary cancers. The doctor that performed the last surgery said my medical record was remarkable. I also have a ton of other stuff, hypertension, type 2 diabetes, essential tremor and too many others to mention. If I live long enough I might write a book. Take care!

REPLY
1 reply
anxious88 | @anxious88 | May 3 2:03am
In reply to @jaxterdb "Hi. I was very lucky. I didn’t have to have chemo or radiation. I just had..." + (show)
@jaxterdb

Hi. I was very lucky. I didn’t have to have chemo or radiation. I just had CT scans (pelvis, abdomen and chest) every 6 months for a few years and then annually after. I did develop a pseudo cyst that had to be drained, but is was a pretty simple procedure. If you are familiar with Randy Pauch, I had the same doctor, at UPMC, in Pittsburgh. I do take two 36,000 unit Creon capsules with every meal. It does help but I still have some issues. The Creon is very expensive but I’m lucky that I get it from the VA as I am a disabled veteran.

Since this surgery, I’ve had surgeries for prostate cancer (2010), lung cancer (2019) and kidney cancer, last September. These were all primary cancers. The doctor that performed the last surgery said my medical record was remarkable. I also have a ton of other stuff, hypertension, type 2 diabetes, essential tremor and too many others to mention. If I live long enough I might write a book. Take care!

Jump to this post

Did you suffer any recurrence of the NET?

REPLY
pavlina60 | @pavlina60 | May 3 8:30am

Hello! I have been there :). My pNet was discovered incidentally during a stroke work-up. Along with endometrial cancer, which shewed on my FDG-PET scan. I had distal pancreatectomy, spleen and gallbladder removal plus total hysterectomy. My pNET was Grade 2 ( Ki 18%) with liver metastases ( stage 4). You have to make your decision, but looks like the tumor is not that big ( mine was 20×16 cm, 1.8kg) and easily resectable. I would go for surgery before it spreads ( like mine).
Reach out to me if you need some info. Yes, you will need some immunizations b/c your spleen may be removed as well.

REPLY
sarmi67 | @sarmi67 | May 3 11:35am

Hi. My name is Jeannie. I just found out too. They found my tumor during an endoscopy. Mine is in the duodenum by the pancreas. stage 1. They plan to remove it. Meeting with the surgeon soon. Waiting for the appointment. I’m trying to remain calm but honestly I have so many questions.

REPLY
3 replies
Turkey | @tomrennie | May 3 12:25pm
In reply to @sarmi67 "Hi. My name is Jeannie. I just found out too. They found my tumor during an..." + (show)
@sarmi67

Hi. My name is Jeannie. I just found out too. They found my tumor during an endoscopy. Mine is in the duodenum by the pancreas. stage 1. They plan to remove it. Meeting with the surgeon soon. Waiting for the appointment. I’m trying to remain calm but honestly I have so many questions.

Jump to this post

Hi Jeannie. You are in the right place for questions. Take a deep breath and ask the three questions that scare you the most. There are no dumb questions. The amazing folks here will share their real life experiences with you.

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | May 14 4:15pm
In reply to @sarmi67 "Hi. My name is Jeannie. I just found out too. They found my tumor during an..." + (show)
@sarmi67

Hi. My name is Jeannie. I just found out too. They found my tumor during an endoscopy. Mine is in the duodenum by the pancreas. stage 1. They plan to remove it. Meeting with the surgeon soon. Waiting for the appointment. I’m trying to remain calm but honestly I have so many questions.

Jump to this post

Hi @sarmi67, I echo @tomrennie's and @kim1965's welcomes. I'm also inviting @hopeful33250 into this discussion. I believe her NETs was also found in the duodenum.

Good news, your tumor was discovered at an early stage. Have you been able to meet with the surgeon? How are you doing?

REPLY
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