PNET in Tail of Pancreas, Portal and Splenic Veins
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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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.
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.
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.
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.
@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?
@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
What specific surgery did you have besides a hysterectomy? I am looking for a surgeon to do my specific surgery laparoscopically.
Hi,
When I put in New York, it says there are 13 but their names don't show.
Thank you
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..