1/2 Pancreas, 1 lymph node involved. What treatment would be likely?

Posted by midford @midford, Jul 2 4:27pm

I had half my pancreas removed along with 9 lymph nodes. As a surprise to me, the cancer had spread to 1 of the lymph nodes. So now I'm referred to an Oncology Endocrinologist. That is at the end of July. Just wondering what the likely treatment may be. My surgeon talked about maybe hormone suppressant but I'm reading about a lot of other things. And I believe my stage of cancer goes up because of the 1 lymph node???

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

Turkey, Volunteer Mentor | @tomrennie | Jul 2 7:17pm

@midford

Welcome to Mayo Connect. What was your original diagnosis?

midford | @midford | Jul 2 9:58pm

In reply to @tomrennie "@midford Welcome to Mayo Connect. What was your original diagnosis?" + (show)

PNET. Non functioning. Gr 1. It was blocking the pancreatic duct and 1/2 my pancreas was severely atrophied. So removed the tumour, 1/2 pancreas and 9 lymph nodes and my gallbladder. My spleen was preserved but infarcted .

Turkey, Volunteer Mentor | @tomrennie | Jul 3 8:46am

@midford
Is your Oncology Endocrinologist a NET specialist?

midford | @midford | Jul 3 9:18am

Oh very good question. I don’t know. Hhmmm. A question to add to my list! Thank you! Part of me thinks no, read a bio and pretty sure it didn’t mention that specifically. Thx again!

jlsgt | @jlsgt | Jul 3 12:30pm

How do you feel right now? You might do well with a drug like Lanreotide to suppress further growth. I'm monitoring NETs in lymphnodes and a mass myself. I'm on monthly Lanreotide shots. Feeling good right now. Good luck to you.

lindabees | @lindabees | Jul 3 12:43pm

I would recommend trying to consult with a net specialist to ensure that you get the proper follow up and/or treatments. General oncologists and other doctors often don't have the required knowledge to properly treat this disease so it really does require a specialist approach if at all possible. You can search for one by state at
https://netrf.org/for-patients/neuroendocrine-tumor-doctor-database/
Or
https://www.carcinoid.org/for-patients/treatment/find-a-doctor/
Its also important to learn as much as you can about nets and the available treatments. This will help guide you in your discussions with your doctors and help you to be your own strongest advocate, which is very important. Those sites that I noted have alot of great information information, along with Mayo's site and also
http://www.netcancerawareness.org
Have you had any scans? MRI of the abdomen and pelvis or GA68 pet scan?

midford | @midford | Jul 3 9:29pm

In reply to @lindabees "I would recommend trying to consult with a net specialist to ensure that you get the..." + (show)

Thanks! But I’m not American. I think I’ll do a bit more research. Good idea!

midford | @midford | Jul 4 6:54am

In reply to @lindabees "I would recommend trying to consult with a net specialist to ensure that you get the..." + (show)

Yes. I’ve had a few. CT and MRI. Abdomen, pelvis and chest. . My next one is September. I will be followed for 5 years now, every 6 months.

Turkey, Volunteer Mentor | @tomrennie | Jul 4 9:12am

In reply to @midford "Yes. I’ve had a few. CT and MRI. Abdomen, pelvis and chest. . My next one..." + (show)

Were any of your scans a Ga-68 Dotatate PET scan? That is what my oncologist uses for my metastatic PNET.

midford | @midford | Jul 4 9:48am

In reply to @tomrennie "Were any of your scans a Ga-68 Dotatate PET scan? That is what my oncologist uses..." + (show)

No I haven't. Thanks to you I've found a PNET clinic close to me and have emailed them to see how to get an appointment. I have only had it spread to one lymph node only and that was 76 cells out of 3121 cells in that one lymph node out of 9 nodes removed. I guess that is metastizing but close and not distant. Learning all this lingo. I'm trying to determine how concerned I need to be. I wish you all the best and thanks for your comments.