Anyone have pNET in pancreatic tail & had distal pancreactomy?

Posted by kathyfujii @kathyfujii, Apr 11 11:23am

I've just been diagnosed with a 3.8cm pnet in my pancreatic tail involving arteries and veins in the spleen. Waiting for 2 surgical consultations. Is surgical resection all done laparoscopically. What are recovery experiences.

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

Turkey, Volunteer Mentor | @tomrennie | Jun 1 7:43am

In reply to @kathyfujii "@tomrennie It's Grade 2. What did they do for ur liver metastases" + (show)

@kathyfujii I also have a grade 2. I live on chemo to address the metastasis primarily to my liver. It also has spread to my bones. My tumors and lesions were and are bigger than yours. I believe that also plays a factor.

mcharlesfrancis | @mcharlesfrancis | Jun 2 7:06am

Go to the Seena Magowitz foundation web site and join the support group for NET

kathyfujii | @kathyfujii | Jun 4 2:18am

In reply to @kathyfujii "@tomrennie It's Grade 2. What did they do for ur liver metastases" + (show)

@kathyfujii

I'm scheduled for liver ablation next month. Then distal following week. I'm not sure if I need any medicines treatment after.

Turkey, Volunteer Mentor | @tomrennie | Jun 4 12:09pm

In reply to @kathyfujii "@kathyfujii I'm scheduled for liver ablation next month. Then distal following week. I'm not sure if..." + (show)

@kathyfujii I hope that the procedures go well for you and that meds aren't needed too. Please keep us posted on how things go OK?

kathyfujii | @kathyfujii | Jun 4 12:22pm

In reply to @tomrennie "@kathyfujii I hope that the procedures go well for you and that meds aren't needed too...." + (show)

Ok@tomrennie

katzen5 | @katzen5 | Jun 28 8:24pm

I was just diagnosed, yesterday in fact, with pancreatic cancer, with a mass 4.9x3.8 cm involving the distal pancreatic body and tail with infiltrative features and a small adjacent cystic 1.5 cm lesion .
Is this the right group for me. I haven't seen my doctor yet, will have an appointment this week.

christobelle89 | @christobelle89 | Jun 29 8:32am

First, is this a neuroendocrine cancer? I had neuroendocrine cancer on the tail of my pancreas. Discovered in late 2016 and removed at Hopkins in early February 2017. They removed the cancer and the spleen and because it was small I have been monitored with CTs since and have just had a recurrence. I have mets to the liver and they are unable to "debunk" so for now I am on Lanreotide injections. Waiting to see if they are helpful. I got two opinions before picking Hopkins as they had a support system. I have my Lanreotide with a local oncology group in Richmond VA. Good luck.

mcharlesfrancis | @mcharlesfrancis | Jun 29 8:40am

In reply to @katzen5 "I was just diagnosed, yesterday in fact, with pancreatic cancer, with a mass 4.9x3.8 cm involving..." + (show)

@katzen5 Right now, try not to jump ahead of yourself. The scan tells us there is a mass, but your doctor will need to review all of the imaging and, if not already done, the biopsy results to determine exactly what type of pancreatic cancer it is, whether it has spread, and whether surgery is an option.

When you meet with your doctor this week, some important questions to ask are:

Is this pancreatic adenocarcinoma?
Has it spread anywhere outside the pancreas?
Is the tumor resectable, borderline resectable, or unresectable?
Will I need additional imaging or a biopsy?
Should I have genetic testing and molecular profiling?
What treatment do you recommend first?

I would also encourage you to look into the Seena Magowitz Foundation. They host Zoom support meetings for pancreatic cancer patients twice a month, where you can talk with others who are on the same journey. Many people find it comforting to connect with patients who truly understand what they're going through.

Take one step at a time. You don't have to learn everything today. Get through this appointment, ask your questions, and let your doctors help you build a treatment plan.

kathyfujii | @kathyfujii | Jun 29 9:13am

In reply to @christobelle89 "First, is this a neuroendocrine cancer? I had neuroendocrine cancer on the tail of my pancreas...." + (show)

@christobelle89. I have a question on how the mets have metastasized to the liver after the pancreatectomy and Splenectomy removed the Pnet. Is there still a pathway to spread after the tumor is removed. What was the immediate medicinal treatment after your surgery.

My liver ablation for 2 small lesions is next month followed by pancreactomy/splenectomy. I might have been naive that it would not produce further lesions after removal.

katzen5 | @katzen5 | Jun 29 2:10pm

In reply to @mcharlesfrancis "@katzen5 Right now, try not to jump ahead of yourself. The scan tells us there is..." + (show)

@mcharlesfrancis , thank you so much for your encouraging words, I truly appreciate it.
Also thank you for the list of questions I should ask my doctor. I will print your answer and take with me as soon as I get my appointment.

I still seem to be in a daze as this was so unexpected.

I will keep the group up to date.