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.

Hi,
I’m new to all this and I’m pretty scared. Pancreatic Neuroendocrine tumor was found by accident last month. It’s very small, about 1.5 cm. Getting PET Gallium on 1/26. Had an appointment with surgeon last week and was told about the whipple procedure which scared me more than cancer. I’m only 42 and have a 3 year old little boy. I’m scared. Any advice, I’m very new to this process

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@jodaface02

Yes, Karmanos Cancer institute in Detroit Michigan. The doctor and staff there are wonderful. Did six session of chemo therapy ... Now I am at a 2-month break. And they are monitoring the behavior of my tumor... While letting my body recover from the chemo therapy... But with that in the supplements I take daily... I feel as if I don't have cancer at all.... I feel perfectly fine except for the back pains that come and go... But after my next appointment in March where are going to figure out what the next step for me is after the CT scan shows whatever results I may have.. keeping my fingers crossed

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Oh and appetite is wonderful... Can't stop eating like my taste buds we're going crazy

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Yes, Karmanos Cancer institute in Detroit Michigan. The doctor and staff there are wonderful. Did six session of chemo therapy ... Now I am at a 2-month break. And they are monitoring the behavior of my tumor... While letting my body recover from the chemo therapy... But with that in the supplements I take daily... I feel as if I don't have cancer at all.... I feel perfectly fine except for the back pains that come and go... But after my next appointment in March where are going to figure out what the next step for me is after the CT scan shows whatever results I may have.. keeping my fingers crossed

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@jodaface02

Hello everyone 6/28/22 I have been diagnosed with pancreatic cancer stage 4... My stomach kept burning in the insides, I kept throwing up, and was very very fatigued. Sweating so much in bed as if someone threw a bucket of water on me and my comforter.. 5 cm on my pancreas some spots in my stomach and 3 cm on my liver... And they told me surgery is not an option that I will have this for life.. now I have about $6,000 of medical bills & missing a lot of work through chemo. My wife decides to kick me out right before Christmas ran back to her old sugar daddy.. Now I'm a 38 year old truck driver who stays in his mother's basement. Because my life partner decide that I was no good anymore.... I wish I could redo the last 4 years over 🥲4sure.... I'm not sure what God has planned for me next but whatever it is.... Whatever it is I will be ready 💪🙌🙏 Thank you and God bless you all

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Hello @jodaface02,

You have had quite a journey over the last several months. As I've read your previous posts, it sounds as if you are being seen at a good cancer center. Is that correct?

How is your appetite since you began treatment? Are you noticing a lessening of symptoms now?

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Hello everyone 6/28/22 I have been diagnosed with pancreatic cancer stage 4... My stomach kept burning in the insides, I kept throwing up, and was very very fatigued. Sweating so much in bed as if someone threw a bucket of water on me and my comforter.. 5 cm on my pancreas some spots in my stomach and 3 cm on my liver... And they told me surgery is not an option that I will have this for life.. now I have about $6,000 of medical bills & missing a lot of work through chemo. My wife decides to kick me out right before Christmas ran back to her old sugar daddy.. Now I'm a 38 year old truck driver who stays in his mother's basement. Because my life partner decide that I was no good anymore.... I wish I could redo the last 4 years over 🥲4sure.... I'm not sure what God has planned for me next but whatever it is.... Whatever it is I will be ready 💪🙌🙏 Thank you and God bless you all

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So sorry! I have added you to my prayer list. 🙏

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@wifey2021

My husband has (had) a 2.7 tumor in the tail of his pancreas, found incidentally, that was just removed yesterday. He is doing well, and we are thrilled that it is gone. He retained 2/3 of his pancreas and his spleen was removed. I know full well the stress that this brings about. It’s been 4 months of full-on anxiety.

You mentioned having had a number of issues, I wonder if there are scans you can go back to get a growth pattern. He had had a CT to check and hernia repair one year before the tumor was found (tumor went unnoticed at that time). They referred back to it and found that it had not grown. This gave us the confidence to find a NET specialist, as we felt we had some time. Our local doctors did not take the time to do anything other than suggest surgery and we wanted to feel certain it was the best approach. We chose to drive 90 minutes to a university hospital and what a difference! Lots of tests later, he decided on surgery, feeling like he had explored it thoroughly. Time is a gift; use it to your advantage.

I know the watching and waiting would not have been the best option for my husband, as everyone handles that kind of thing in their own way.

All the best to you!

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I have been diagnosed with 16 cm PNET in December 2022.. Discovered accidentally during CT of my chest. Multiple CT, MRI and PET scans later, I am going for surgery on February 1st. Preparing for the worst and hoping for the best!🙏

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I have a 1cm PNET in the tail of my pancreas as well. I would strongly suggest that you see a pancreatic specialist. They will want you to do a gallium 68 PET scan, which will let you know for sure if it has spread anywhere else. Best wishes to you

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My husband has (had) a 2.7 tumor in the tail of his pancreas, found incidentally, that was just removed yesterday. He is doing well, and we are thrilled that it is gone. He retained 2/3 of his pancreas and his spleen was removed. I know full well the stress that this brings about. It’s been 4 months of full-on anxiety.

You mentioned having had a number of issues, I wonder if there are scans you can go back to get a growth pattern. He had had a CT to check and hernia repair one year before the tumor was found (tumor went unnoticed at that time). They referred back to it and found that it had not grown. This gave us the confidence to find a NET specialist, as we felt we had some time. Our local doctors did not take the time to do anything other than suggest surgery and we wanted to feel certain it was the best approach. We chose to drive 90 minutes to a university hospital and what a difference! Lots of tests later, he decided on surgery, feeling like he had explored it thoroughly. Time is a gift; use it to your advantage.

I know the watching and waiting would not have been the best option for my husband, as everyone handles that kind of thing in their own way.

All the best to you!

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