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.

Profile picture for jlsgt @jlsgt

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.

Jump to this post

I had Octreotide in the hospital for almost two weeks. And it sounds like I maybe having a shot once a month but that is being left to an Oncology Endocrinologist I'm seeing at the end of the month. I have never had any symptoms as this was found incidentally. It was the pancreas that looked odd they went to investigate...after finding that during an xray of my hip. That was 12 years ago. Nothing could be seen then. Then last year I went for a liver ultrasound and voila they found this tumour. One doctor said leave it, one doctor said take it out, So I went for a third opinion at the Mayo Clinic, and they suggested to removed it too. So came home and had it removed.

REPLY
Profile picture for midford @midford

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.

Jump to this post

Good for you!! I hope the specialist meeting goes well. Please let us know what you learn. Best of luck to you!!

REPLY
Profile picture for lindabees @lindabees

Good for you!! I hope the specialist meeting goes well. Please let us know what you learn. Best of luck to you!!

Jump to this post

Thank you! It sure has been a ride. Like I said, I never had one symptom, so to put myself through it all hopefully was worth it. I was in hospital when my one daughter was having my other daughter's baby shower AT MY HOUSE. So luckily the hospital let me out for the day. Got a 'get out of jail' card. Daughters weren't too happy I chose to do the surgery( one is a nurse and was out of the country) then but I wanted it gone and dealt with before the birth of the baby. She was born last week, and I feel very well. But now back to this treatment...what do I do know and what are the side effects? . All so hard with ZERO symptoms. All the best to you and your journey. Seems we all have very different ones.

REPLY

Get a NET Specialist, the single most important thing for you to do at this point. NET is very rare, and many onocologists are not trained on the best care for a NET patient. In our case our original Onocologist, who served in his position for 40 years had a total of 2 cases of NET. We probably owe my wife's life for that referral to a Multi-disciplinary team that includes an NET Specialist. Please make that connection asap, and let us know how we may assist in other areas that relate to our own cases. You got this, and we got you!

REPLY
Profile picture for kim1965 @kim1965

Get a NET Specialist, the single most important thing for you to do at this point. NET is very rare, and many onocologists are not trained on the best care for a NET patient. In our case our original Onocologist, who served in his position for 40 years had a total of 2 cases of NET. We probably owe my wife's life for that referral to a Multi-disciplinary team that includes an NET Specialist. Please make that connection asap, and let us know how we may assist in other areas that relate to our own cases. You got this, and we got you!

Jump to this post

Thanks! Found a NET clinic close to me and have all info written out to drop to my family dr tomorrow. Here we need them to refer us. I’ve also emailed them. Sounds like you were on the ball too! Good for you. I have been pretty on top of all this too. And had some luck. This group/you asking about a specialist. 4 days notice for surgery. Expected it longer. Done Lickety split. Very grateful. All the best for your wife’s care going forward.

REPLY
Please sign in or register to post a reply.