Scared - Suspected NET on tail of the pancreas
Confused by the information online re: NETs. There is a 2.3 x 1.7 mass on the tail of my pancreas with no vascular activity. The doctor is going to skip the EUS/FNA, go straight to surgery to remove it, and biopsy it then. Blood tests are normal. Conflicting info – are neuroendocrine tumors always cancer or can they be benign? Has anyone else had this surgery to remove a NET and how much pain, recovery, etc…is involved?
Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.
Thanks I did. My surgeon at Memorial Sloan Kettering is an expert on NETs and the robotic surgery, so was blessed.
You were lucky, there was no pain. I was in CRAZY pain and on painkillers for 2 weeks and have a fistula now, so drain still in. I am still recovering 3 weeks later…
I know. I am afraid for any more scans. 'Cause I can't go through this ever again.
I'm so sorry for the long pain! I had my drain for about a month. Uncomfortable, but lucky for sure. Be sure to keep up with the follow up scans. I skipped and delayed because my husband had heart surgery, and I was "too busy". When I finally got around to it, 6 months late, I had 30-40 metastasis in my liver that were growing fast. Best wishes for your recovery!
Very good news that there wasn't any spread. I also had a fistula after my Whipple surgery, which healed on its own at four months. Hopefully yours will heal quickly. Wishing you well on your recovery.
Oh my! Did you have this dern drain in that long? I can't bear it. I can't go anywhere it's so uncomfortable.
Hopefully yours will heal a lot quicker then mine, I just wanted to let you know it is possible for them to heal on their own. Mine was draining around 230ml each day, it went down to 80ml for one day then completely stopped the following day. I didn't really have much pain from the drain it was mostly inconvenient, but I was very happy to see to go. Hang in there.
I don't know how to even get help.
My GI doctor sent me to a pancreas specialist for my pancreas mass and then he lied in my records. I tried another one who didn't acknowledge the mass, skipped it over entirely, and left oit my history from the evaluation, leaving me at risk.
Can I ask where the doctors are who take you seriously?
Do you have symptoms? Maybr that's why they want to remove it.
Can I ask if you spoke with a NET Specialist? If not, I have been reading these forums for months to help me wife, and we have NET Specialist and a multi-disciplinary team that has cared for her for 9 months, managing the chemo therapy (pill version), a very effective chemo plan that has reduced the mass on the pancreas by 70%, and the liver which had too numerous lesions to count, to now around 20, which they are ready to go in for surgery on March 1st, and get as much as they can, and our prognosis is good being more of a maintenance keeping the slow growing NET at bay. So the most important bit of advice is to get a NET Specialist, and Mayo is one of the best, there must of been some miscommunication with your situtation. Good luck on your journey, let us all know if we can help? Here is a link online to find a NET Specialist if you need it: https://netrf.org/for-patients/neuroendocrine-tumor-doctor-database/
Hi, who iz your oncologist? I see Dr. Diane Reidy-Lagunes and Lindsay Juste (at 53rd Street) is the nurse who gives me my monthly injections of Octreotide
My surgeon was Dr Alice Wei and since it was cured with surgery I haven't needed anyone else. I am now going to start using the Integrative Medicine Team though.