1. < Neuroendocrine Tumors (NETs)

PNET in Tail of Pancreas, Portal and Splenic Veins

Posted by mpt @mpt, Jun 4 3:26pm

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.

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gangcarotid1 | @gangcarotid1 | Jun 6 8:07am

My surgeon at Mayo talked me off the cliff regarding open vs laparoscopic or robotic surgery prior to having 2 tumors removed from a kidney. Simply said, the more complexities being faced, the higher the possibility of bleeding that could lead to a transfusion, or could cause other types of leakage in confined affected spaces (urine leaks, bile leaks, etc.) Plainly stated, it would take time to withdraw all laparoscopic or robotic equipment in the case of a leak, wherein he'd've had to open me up anyway, and by then we'd be talking transfusion. Risk of bleeding would be abated by him being able to immediately "grab" any bleed and stop it.

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mpt | @mpt | Jun 6 9:09am
In reply to @gangcarotid1 "My surgeon at Mayo talked me off the cliff regarding open vs laparoscopic or robotic surgery..." + (show)
@gangcarotid1

My surgeon at Mayo talked me off the cliff regarding open vs laparoscopic or robotic surgery prior to having 2 tumors removed from a kidney. Simply said, the more complexities being faced, the higher the possibility of bleeding that could lead to a transfusion, or could cause other types of leakage in confined affected spaces (urine leaks, bile leaks, etc.) Plainly stated, it would take time to withdraw all laparoscopic or robotic equipment in the case of a leak, wherein he'd've had to open me up anyway, and by then we'd be talking transfusion. Risk of bleeding would be abated by him being able to immediately "grab" any bleed and stop it.

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Thank you for you reply. The surgeon I saw basically said "I have to see everything".
I just can't bring myself to be opened up and then there is a chance he will not be able to pull the tumor out of the veins. The incision line is rather long as he described it.

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gangcarotid1 | @gangcarotid1 | Jun 6 9:44am
In reply to @mpt "Thank you for you reply. The surgeon I saw basically said "I have to see everything"...." + (show)
@mpt

Thank you for you reply. The surgeon I saw basically said "I have to see everything".
I just can't bring myself to be opened up and then there is a chance he will not be able to pull the tumor out of the veins. The incision line is rather long as he described it.

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I completely understand your fear. Now that I am 8 mos kidney-tumor free, I'll be going back to Mayo again to have a tumor removed from the bifurcation of my carotid arteries in my neck. Truthfully speaking, while I was scared to death about being cut open across my abdomen (scar from between my boobs to 2+" below my belly button), now looking at having my throat cut, w at least a 4" incision, what i try to focus on is being rid of the cancer. If they don't try, it'll never go away, it'll never get smaller, and I will not get younger. Sending you hugs and wishing you courage.

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zacharycat | @zacharycat | Jun 6 1:10pm
In reply to @mpt "Did the cancer go into your veins like myself? My spleen, gall bladder, and liver are..." + (show)
@mpt

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.

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The doctors didn't say anything about veins, but since that part of the pancreas shares blood supply with the spleen that went too. So I need periodic vaccines to compensate.

Think the main risk is metastasis to the liver, which I have unfortunately. No symptoms until 2 months before diagnosis so I doubt that time mattered much.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jun 7 8:08am
In reply to @mpt "Diagnosed 1/31/25. Cat scan is on 6/11/25. Laparoscopic surgery has not been suggested, only open surgery..." + (show)
@mpt

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.

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@mpt As you have indicated that you are in New York, the listing of NETs specialists includes several in NY. Here is the list by state: https://www.carcinoid.org/for-patients/treatment/find-a-doctor/.

I wish you well as you continue to search for the best answer. Will you continue to post and let me know how you are progressing in making this decision?

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pavlina60 | @pavlina60 | 6 days ago

@mpt - I live in Syracuse. Dr.Mashaal Dhir is a hepatobilliary onco surgeon who did my surgery (open, as I needed hysterectomy). He is moving to Buffalo Roswell Park Center and he does robotic surgery! Extremely knowledgeable, kind and caring!
Reach out to me if I can help you!
Pavlina

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mpt | @mpt | 6 days ago

What specific surgery did you have besides a hysterectomy? I am looking for a surgeon to do my specific surgery laparoscopically.

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mpt | @mpt | 6 days ago
In reply to @hopeful33250 "@mpt As you have indicated that you are in New York, the listing of NETs specialists..." + (show)
@hopeful33250

@mpt As you have indicated that you are in New York, the listing of NETs specialists includes several in NY. Here is the list by state: https://www.carcinoid.org/for-patients/treatment/find-a-doctor/.

I wish you well as you continue to search for the best answer. Will you continue to post and let me know how you are progressing in making this decision?

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Hi,
When I put in New York, it says there are 13 but their names don't show.

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mpt | @mpt | 6 days ago
In reply to @tomatlanta "Yes, I understand that your stage makes surgery a real option and I hope it works..." + (show)
@tomatlanta

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.

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Thank you

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pavlina60 | @pavlina60 | 5 days ago
In reply to @mpt "What specific surgery did you have besides a hysterectomy? I am looking for a surgeon to..." + (show)
@mpt

What specific surgery did you have besides a hysterectomy? I am looking for a surgeon to do my specific surgery laparoscopically.

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I was not clear :). I had open surgery because the need of hysterectomy at the same time.
I had distal pancreatectomy, splenectomy, cholecystectomy, partial stomach resection. Dr.Dhir operated my NET, and another Dr did the hysterectomy at the same time..

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