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Just diagnosed with pancreatic NET stage 1
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
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HugInterested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.
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Not my intent. But I do have a problem when things are misrepresented. I am just trying to learn, so I will ask questions.
These type of conversations are not helpful to what the goal of the forum is I believe. We all are here to try to help each other battle NET’s.
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5 ReactionsMy Mayo care team never said terminal.
Define terminal for me? Apparently with your vast knowledge of NETS, I wrong.
I have been dealing with NET’s for 18 months. I have had a half a dozen doctors tell me it is terminal. I’ve been told i was going to die last August and last November. NET can be managed but not cured from what I’ve been told.
Perhaps your vast knowledge of NET’s could be forwarded to us all so we can pass it along to our medical teams.
Stage 4 doesn't have to be terminal. You are spreading incorrect information.
I’m 63, no systems at all. NET discovered while getting a hernia repaired in April of 2022.
Mine started in my pancreas and spread to my liver and is inoperable. Stage 4, terminal. All i can do is buy time, so don’t wait to long once it spreads your in trouble.
You should ask your doctor what they recommend assuming they are familiar with treating NET cancer.
If you have to do chemotherapy, do it. NET’s gets in your blood stream and can turn up anywhere. Liver is a prime area because of the rich blood flow. Dr. May want to do chemo before they cut it out.
Good luck
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4 ReactionsI am in a similar situation.....69 YO....incidental discovery of well differentiated NET on tail of Pancreas....no symptoms....2CM size. On the fence about surgery now......just exploring this disease. I wish you well.
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1 ReactionHello @kattz1,
I would like to join @colleenyoung, in welcoming you to Connect. How are you feeling? Any new scans or treatment plans in the future?
Hello love,
At this time my treatments just consist of MRIs, blood work Dr visits, my lanotride shots have been stopped as of 11/22 so right now I have no real treatnents
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