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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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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.
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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?
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 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?
I 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 ReactionI’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 ReactionsStage 4 doesn't have to be terminal. You are spreading incorrect information.
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.
Define terminal for me? Apparently with your vast knowledge of NETS, I wrong.
My Mayo care team never said terminal.