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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.
Hello @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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1 ReactionHi @kattz1, I see that you are reaching out to others here in the support group. Welcome.
By sharing here in the forum, you are connecting with several people where all can benefit from multiple experiences and perspectives.
You may also be interested in the monthly Zoom meetings led by a Mayo Clinic social worker. The next meeting is March 2, 2023. Find out how to sign up here:
– Neuroendocrine Cancer Support Group Meeting https://connect.mayoclinic.org/event/neuroendocrine-cancer-support-group-meeting-fl-1-122/
May I ask what treatments you've had or will be getting?
The NET team had already scheduled a PET scan for June but, after the surgery and the pathology report, the surgical team changed it to a CT scan for later in the summer. I don't know if you can ever "relax" after having this type of experience, I am sure there will be some anxiety as that time approaches.
Hello @wife2021
As you can see, I moved your post back to the discussion group where you originally posted so that others could see your good news. You are right when you say that success stories mean a lot. Your post is so encouraging for all of us with NETs to know that surgical procedures can be helpful and can help us create a sense of a future with hope!
I can understand your thankfulness for the NET specialist that you saw. It is always the best to seek out the most experienced NET specialist when you are dealing with this rather rare form of cancer. You are fortunate to have found such a specialty center.
Do you know what type of follow-ups will be done going forward?
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3 ReactionsHi All,
I have not been a member of the group for very long. My husband's incidental pNet finding occurred in September '22 and we began the long march toward understanding NETs, that most of you are aware of. He was not having any symptoms and the PET scan only showed the pNet (in the tail) and a couple of potential lymph nodes in his mesentery.
Two weeks ago, the pNet was resected, along with his spleen in an open surgery. The lymph nodes turned out to be nothing. His pathology showed a G1 with ki67 of <3% and none of the nodes examined (13 of them) showed any signs of cancer. There was also an IPMN hanging out with the neuroendocrine tumor. The 6-month dotatate 68 followup PET scan has been changed to a regular CT.
He is doing well post-surgery and we are beginning to learn how to plan for a future again. I share this because success stories meant so much to me when we were struggling with his diagnosis and what the future held. I hope it can help someone else.
I am so thankful for The James Cancer Center at OSU (hope I'm allowed to mention them), the care was exceptional. I encourage everyone to find a NET specialist to help them.
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2 ReactionsI'm stage 4 pancreatic and liver cancer, tail end pnets I've had no surgeries,radiation very little chemo
Would you be willing to message me at my email?
They saw one tumor on 5/2017 via an EUS. It was 6x10mm and biopsied to confirm a pancreatic NET. The 1 surgeon did a partial pancreactomy removing the neck, but missed the tumor. I had a FDG PET scan on4/2018 and they saw the same missed NET and it had grown. I waited for better insurance so I had a partial Whipple at Mayo on 2/2019 and the surgeon found the original tumor that was in the tail and found a second tumor on the head of the pancreas. I guess if I didn’t have the second surgery the second tumor may not have been detected, unless another PET was done. We believe I don’t have receptors. I get yearly MRI and labs for follow up!
After they removed the tumor they found another two ?