PNET in Tail of Pancreas, Portal and Splenic Veins

Posted by mpt @mpt, Jun 4, 2025

PNET Grade 2 (K-67 3.2%) in tail of pancreas, both portal and splenic veins. No mets to liver or spleen. Just finished 3rd round of CAPTEM. Will do Cat-scan to see if shrinkage. Anyone have laparoscopic surgery to remove part of pancreas, spleen, and tumor in veins? Saw one surgeon who wants to do open surgery and says might not be able to get tumor out and if so, will have to abort surgery.

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

mpt | @mpt | Jun 9, 2025

May I ask where exactly was your cancer and where did it start and where did it spread to?

lindabees | @lindabees | Jun 9, 2025

In reply to @mpt "Hi, When I put in New York, it says there are 13 but their names don't..." + (show)

Here's a link to New York specialists. Dr. Wolin is at Mt Sinai and has treated nets patients exclusively for decades
https://netrf.org/for-patients/neuroendocrine-tumor-doctor-database/

mpt | @mpt | Jun 9, 2025

Hi Yes. I know of him already. I already have an oncologist who is top in the field. I was looking for surgeons that specialize in the type of surgery that I will need- hence my original post.
Thank you for your reply.

bijou17 | @bijou17 | 23 hours ago

In reply to @mpt "Did the cancer go into your veins like myself? My spleen, gall bladder, and liver are..." + (show)

@mpt hi I just had a 6 month follow ct scan for lungs and they now found a 3.1 retroperitoneal mass right by the splenic vein they did a gallium but didn’t show but back in Feb 2025 it wasn’t reported on a ct scan with contrast but was lit up like a light bulb im work 8 months for an MRI Feb 27

Teresa, Volunteer Mentor | @hopeful33250 | 13 hours ago

In reply to @bijou17 "@mpt hi I just had a 6 month follow ct scan for lungs and they now..." + (show)

@bijou17 Since this finding, what will the next step be?

bijou17 | @bijou17 | 13 hours ago

In reply to @hopeful33250 "@bijou17 Since this finding, what will the next step be?" + (show)

@hopeful33250 well apparently I’m waiting 8 months to get an MRI I haven’t no even seen a NET specialist yet for anything the thoracic surgeon doesn’t seem to want to refer me to them I’m so frustrated we have a huge cancer clinic here and a specialized Net team

Teresa, Volunteer Mentor | @hopeful33250 | 9 hours ago

In reply to @bijou17 "@hopeful33250 well apparently I’m waiting 8 months to get an MRI I haven’t no even seen..." + (show)

@bijou17 I can understand your frustration. You say there is a huge cancer clinic and a NET team nearby. Is there any way you can appeal to get a referral there?