NET tumor of pancreas (1 cm) diagnosed

@anneliza
It often takes several months for our appetite to return to normal. I appreciate you sharing your experience.

@mmedinnus1
I see that @dbamos1945 has responded to your post. I would also like to recommend, as she did, the importance of seeing a NET specialist. NETs are a rare form of cancer, and a specialist is best able to determine treatment. It really would be in your best interest to have at least one consultation with a NET specialist. There are NET specialists at all three Mayo Clinic locations (appointment information is available at http://mayocl.in/1mtmR63).

If it is not possible to be seen at a Mayo facility, here is a link from the Neuroendocrine Tumor Research Foundation with NET specialists in the U.S.: https://netrf.org/for-patients/neuroendocrine-tumor-doctor-database/page/8/

Are you interested in seeking a second opinion?

@hopeful33250

I live 40 minutes from m a y o Rochester so I will see a consultant there. I also have a friend who is a nurse up in the cities and works with a doctor who specializes in neuroendocrine tumors so he will be my second opinion

@mmedinnus1

That sounds like a good plan! I look forward to hearing from you again.

Will you keep in touch and let me know how the process is going?

@dbamos1945 hi. I had a malignant neuroendocrine tumor on the head of my pancreas and had a whipple surgery 1 year ago. I am still miserable. So many complications and continuing gi problems I can’t solve. I wonder if the whipple was necessary. They got it all and no chemo or radiation. It was tiny. Anyone have any thoughts.

@ln100: Hi! As a NET patient who has received treatment for progressive tumors, if I were you I would continue to have appts with my NET specialist who should be able to find ways to help you feel better. I also receive my Lanreotide 28day injections and get repeat MRI with/without Evoist contrast (I choose to get MRIs every 3 months). My NET specialist also orders CBC, CMP and Chromogranin-A blood tests to stay viliagant for tumor changes.
I want you to feel good, enjoy your life and future too!

Hi @ln100
I had a missed tumor in the neck of my pancreas in 2017. The surgeon performed a partial Pancreatectomy. I had an open surgery and had a pancreatic leak and ended up with sepsis, lost 40 lbs on top of that . Fast forward to 18 months and a PET scan showed the NET tumor was still there and had grown. I waited for better insurance and went to Mayo and had a modified Whipple . They found a second tumor in the head but decided to just remove it as it was under 1 cm and left the head. Again had severe infections pancreatic leak and had to spend 2.5 months in a long term facility on TPN and iv antibiotics. Just 3 month after that I went on a small vacation!

In retrospect, It was tough, but I had several autoimmune diseases and I feel that that contributed to both infections.

Fast forward 7 yrs and I am still NED, eating is better, but there are days where I have to navigate through issues… but they are doable and my overall health is so improved over time. I contribute my ability to survive all this by the grace of God! I navigate having 3c diabetes, eating / bathroom problems and many more, but rejoice that I have no active cancer presently! So it may feel like too great of a battle presently, but over time it has been a blessing. I hope you find your new normal soon, It just takes time and to lean on the love of family and friends and a great church family! 🙏❤️‍🩹

Your NET @ 1 cm is 0.3937 inches. A second CT Scan in 6 months will tell you how fast it is growing. If it is not growing, you are likely very lucky, and then just monitor it, but if it is growing, you might have a problem that will at least require medication (Chemo), in lieu of a Whipple Procedure. I am 82 and my Doc said I was not a candidate for Whipple and would likely die on the table so now I have to get a new Oncologist with NET experience such as at Mayo. Good luck to you, whatever you decide. Regards, Rick

I am sorry to hear that you are still not feeling well, @ln100. If you are not currently seeing a NET specialist, I would highly recommend getting a consultation with one. NETs (neuroendocrine tumors are rare, accounting for approximately 0.5% of all newly diagnosed cancers. In other words: About 1 in 200 new cancer diagnoses is a NET. NET incidence has been increasing, partly because improved imaging and pathology detect more cases. In the U.S., the overall incidence of neuroendocrine neoplasms was about 8.5 per 100,000 people per year in 2021. (from Cancer.gov) Therefore, it is really important that you have at least one consultation with a NET specialist.

There are NET specialists at all three Mayo Clinic locations (appointment information is available at http://mayocl.in/1mtmR63). If it is not possible to be seen at a Mayo facility, here is a link from the Neuroendocrine Tumor Research Foundation with NET specialists in the U.S.: https://netrf.org/for-patients/neuroendocrine-tumor-doctor-database/page/8/facilities,

Many members of Connect have sought a second opinion from a NET specialist. It is important if you feel your symptoms are not being addressed by your current medical team.

Will you let me know how you are doing?

@rdebeer See the above reply from @hopeful33250. It list some resources to locate NET specialists. Have you had and luck finding one yet?