NET tumor of pancreas (1 cm) diagnosed

I am at Mayo in Rochester where the doctor in Internal Medicine began with me six years ago. He has coordinated my care there, since beginning with him. He has followed up on all my appointments with me. Now Mayo has implemented some stupid rule that automatically closes your association with your physician after what someone (not the physician) determines that particular care is complete. So, no I do not have a primary care doctor there or even a doctor that coordinates all areas of healthcare. I believe I will be transferring to another facility after my appointments next week. It seems strange for a patient to opt out of Mayo, but I am so disappointed in just being a number in their huge computer bank.

Do you or did you have NETS cancer? Are you in remission?

Hey all. My husband was diagnosed with NET that metastasized to liver 5 years ago. Since then he’s had the injections, then embolization, then oral chemo and now PRRT/Lutathera to shrink the liver tumors. No NET specialists in Arkansas. Went to MS Anderson about 7 months after diagnosis when our oncologist could still not tell us the location of source tumor. Found out it as pancreas but Dr at MDA did not give us any action plan. At this point we just hope his local oncologist knows what she is doing. Seems odd to me that treating the liver tumors is only plan when the pnet could cause cancer in other organs.

@mdethardt
Welcome to Mayo Connect. I can't disagree with your logic. I have a pnet that spread to my liver. The chemo that I am on works on both. Has anyone suggested that to you? Something that would work on both?

@mdethardt: Sorry to learn of your disappointing experiences. NETS presents differently in patients and requires a NET Specialist Oncologist to guide and provide best treatment at different stages of our cancer journey.
For me I use my local Oncologist, who has minimal experience with NETS, for monitoring my disease and to receive my monthly Lanreotide injection to control symptoms and hopefully tumor progression.
Every 3months I travel to the City of Hope for MRI scan (liver metastases) and blood labs, as well as meet with my NETS Oncologist for his guidance. I hope my vigilance will discover progression early and I will get state-of-art therapy to reduce/control my disease. I will continue this schedule as long as I am able: I travel one day, attend to medical issues the next day and then travel home. Maybe something similar would work for you? Best of health to you… Bette

Thank you for your reply. Your action plan sounds sound. I am trying to convince my husband to see a specialist. This seems to be a common thread that I’m reading with all pnet patients. Fortunately or unfortunately, he feels fine and the cancer has not impacted his daily life. He believes in his oncologist. I don’t and will keep trying to convince him to see a specialist.

I believe they were all supposed to shrink both source and liver tumors. The source tumor must be stubborn because its size has stayed pretty much the same. At least it’s not growing. Thanks for your reply

Must be. My pancreatic tumor and largest liver lesion started off around the same size 8x6cm. They are both around 4x2cm now. Still staying about the same. So the pancreatic tumor is not reducing?

@lanamarie, I encourage you to contact the Office of Patient Experience. They would appreciate getting your feedback and how this may affect where you choose to continue with your care. They may also be able to mediate communication to get you connected.

Mayo Clinic Office of Patient Experience
https://www.mayoclinic.org/about-mayo-clinic/patient-experience
Phone: 844-544-0036 (toll free)
Email: opx@mayo.edu

Call them and voice your concerns. You should be able to select your physician Don’t be afraid to complain.