PNET in Tail of Pancreas, Portal and Splenic Veins

I have not had the surgery, but I had a very similar diagnosis other than it spread to my liver and bones almost 3 years ago. What makes you want surgery so quickly? I am curious?

FWIW my wife, with a grade 2 stage 4 PNET with a large tumor on her pancreas that involves her SMV and other veins was clearly advised against surgery by two hepatobiliary surgeons with the dual rationale that surgery to remove the tumor from the veins was very high risk and, given the metastases to the liver, unlikely to change the course of her illness. The good news is that her 9 courses of CAPTEM reduced the size of both the primary tumor and, more importantly, her liver lesions. Dr. John Weiss at Northwell provided the second opinion regarding surgery.

Hello @mpt and welcome to the NETs support group on Mayo Connect. You don't say how long ago you were diagnosed with the PNET, however, it appears as if this might be a recent diagnosis. Is my understanding correct?

I'm sure you are looking forward to your upcoming CT scan to see if the CAPTEM has resulted in any shrinkage of the Pnet. Do you have a date for the CT scan yet?

While we wait to see if anyone else has had the laparoscopic surgery that has been suggested to you, I am wondering if you have sought a second opinion regarding this type of surgery. It is a patient's right to seek second opinions regarding any surgery and in this situation, where the surgeon is already expressing doubts about the surgery's effectiveness, this represents strong reason to get a second opinion.

Here is some information about seeking a second opinion: https://connect.mayoclinic.org/blog/cancer-education-center/newsfeed-post/tips-for-seeking-a-second-opinion/. As NETs are a rather rare type of cancer, I would recommend that you see a NET specialist. NET specialists are specially trained to diagnose and treat NETs in the most effective way possible.

Mayo Clinic has NET specialists at all three of its locations. If you would like a second opinion at a Mayo facility, here is a link with appointment information. http://mayocl.in/1mtmR63. If you cannot be seen at Mayo for any reason, here is a link to NET specialists throughout the U.S. https://www.carcinoid.org/for-patients/treatment/find-a-doctor/.

Have you considered getting a second opinion, @mpt?

Could it be they want to get it removed before it spreads to the liver or elsewhere?

Just had tail of pancreas, spleen and gall bladder removed in April along with RFA for liver lesions. Open incision not laparoscopic, which I would have preferred.

Diagnosed 1/31/25. Cat scan is on 6/11/25. Laparoscopic surgery has not been suggested, only open surgery which is why I have reached out on here. I found a Dr. Ephraim Tang in Ontario Canada that did the laparoscopic on a patient of similar diagnosis. I am waiting for a call from him. I have an upcoming appointment with another surgeon here in New York. And I have two others in New York as well. I was just reaching out on this forum to see if anyone else has had a similar diagnosis and had laparoscopic surgery.
I did call the Mayo Clinic in Rochester but they told me I would have to redo my PET scan and other tests at their facility. I was told the PET scan is typically done once. I don't feel the need for redoing all the scans in Rochester. I have all my reports and CDs available for them.

Did the cancer go into your veins like myself? My spleen, gall bladder, and liver are clear. Just my pancreas tail, portal and splenic veins.

Yes. They want to shrink it with the CAPTEM, then try and remove the tumor in the veins and take out the tail and spleen.

This is the protocol. Do the chemo meds (captem) so it shrinks the tumor then to remove to go for a cure. Is what the doctors are saying. As there is no METS to liver or spleen. Just in the veins and tail of pancreas. If there is shrinkage after 3 rounds of CAPTEM, they may decide to do more chemo for more shrinkage - to make surgery easier.

Hi,
Thank you for you reply. I have a grade 2 very slow growing. But my liver is clear and that is why I may be a candid for surgery. It only is in the tail of pancreas and the portal and splenic veins. Not in SMV. I guess that is the difference between your wife's condition and myself.
I heard of Dr. John Weiss. There is Dr. Wolfgang at NYU. I will see Dr. John Chabot at Columbia. Also, there is Dr. Dmitri Alden with Lenox Hill Northwell.
If they feel there is enough shrinkage after the chemo, surgery may be on the table but I want it done laparoscopically, not open. I was told by another surgeon that he may not be able to take it out once in and will have to abort the surgery (this is what I don't want). The risk of open surgery and then possibly not being able to get it out?

Yes, I understand that your stage makes surgery a real option and I hope it works out well for you. I am not a physician. I would say that in my experience with NETs and other surgery that you will want to ask a number of questions about laparoscopic versus open procedures. You and the surgeon will need to weigh the benefit of a faster recovery versus the success rate of an open procedure with a clear field where the surgeon's experience with both approaches is highly relevant.

It sounds like you are doing a great job in seeking expert opinions as you choose the best course for you.