Neuroendocrine tumor pancreatic tail

Posted by afsl25 @afsl25, Jun 19 9:27pm

My husband just recently had surgery to remove an neuroendocrine tumor that was in the tail of the pancreas. He had a Distal pancreatectomy (pancreatic body / tail) as well as a splenectomy. The tumor was completely removed but the pathology came back showing a
Well differentiated neuroendocrine tumor with metastases to 3 of 12 regional lymph nodes (pT2, N1). The neoplasm shows perineural and vascular invasion. It is
adherent to the splenic capsule but does not invade it. The Ki-67 Labeling Index is
4 %. The doctor that did surgery is saying to follow up with an oncologist but not to worry about it. I’m very much worried for my husband . I don’t know what to do I’m trying to learn about NETs and help him . Anyone with a similar situation . I’m worried about the lymph nodes that are affected.

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

lindabees | @lindabees | Jun 19 10:05pm

I'm so sorry you're going through this. My husband's story is similar to yours, but your husband has had an even better start to this journey. . My husband had a 10cm tumor removed from the tail of his pancreas but he also had a very large tumor burden in his liver. Surgery removed the tumor from the pancreas. Y90 radioembokization killed almost all of the liver tumors. This began in 2008. Since then he's had treatments with everolimus and captem and is doing well.
Is your husband seeing a net specialist for follow up? This is highly recommended. You can find a specialist and also learn about nets at http://www.netrf.org and http://www.carcinoid.org. another good resource is http://www.netcancerawareness.org
All 3 Mayo locations have excellent net teams. My husband is being treated by Dr Sonbal in their Phoenix campus.
Do you have any specific questions or concerns that you could use some help with? Id be happy to offer whatever help I can.

lindabees | @lindabees | Jun 20 10:58am

I just wanted to add that a ki-67 of 4% is fairly low, indicating that it is a pretty slow growing. For context, my husband's was 7% and has been well controlled over the years.
I know how worried you are and it is understandable. But please know that there are more treatment options than ever before and many live long happy lives after diagnosis. My husband is a great example of that. When we saw our first
specialist 17 years ago, when
my husband still had a 50% tumor burden in his liver, the specialist told us that this could be treated like a chronic disease and he could live many, many years. That turned out to be very true. It has not always been easy and he's had rough days, but he's here and living life.

afsl25 | @afsl25 | Jul 23 7:53pm

I’m posting a little update we just got today after seeing a neuroendocrine oncologist . As mentioned before my husband had surgery to remove A well-differentiated, Grade 2 pancreatic neuroendocrine tumor (NET) with the following characteristics:
• Ki-67 of 4% (moderate growth rate)
• 3 out of 12 lymph nodes were positive
• Perineural and vascular invasion
• Tumor was fully removed surgically
• His CgA level is in the normal range (57.4)

This specialist is recommending for him to be part of a study for this type of NET tumors which basically it’s a chemo pill he will need to take for a period of 4 months , CapTem , we are afraid of spread to actual organs or recurrence but the doctor says it’s only about 5% chance . We’re not against treatment, we just want to make sure this is the best option for him, not just a cautious one and wonder if there’s anyone here that went or it’s going thru the same treatment and can give us just us any advice.

Nancy VanHauen | @vanhauen | 5 days ago

I tolerated CAPTEM very well for 5 months and only went off it when there was no more shrinkage of tumors. The chemo shrank the small bowel NET to where it is no longer visible on MRI and liver and bone NET has been stable for over a year now after the chemo

Turkey, Volunteer Mentor | @tomrennie | 5 days ago

In reply to @afsl25 "I’m posting a little update we just got today after seeing a neuroendocrine oncologist . As..." + (show)

I was on CAPTEM for 13 cycles. My pnet and largest liver lesion shrunk in half. I have been on just capecitabine for the past two years with everything still being stable. The biggest challenge was fatigue. Also, the temozolomide caused nausea, so I was prescribed something for that. What did the doctor tell you about the capecitabine and temozolomide? Do you have any other questions?