Laparoscopic Possible Open Surgery Resection - Small Bowel NETS

Posted by anet782x @anet782x, Jul 22, 2023

Hello All

I just discovered this NETS support group and happy to be here. I am recently diagnosed with NETS in small bowel which was misdiagnosed as enlarged lymph node or kidney stones at local hospital. I have since had biopsy, pet scan and MRI, CT to confirm diagnosis and pathology has it as grade 1-2 with lymph node involvement & primary tumor located but at time of biopsy, they didn't know it existed. I am scheduled for Laparoscopic Possible open surgery for small bowel resection and mesenteric mass resection in one week from today. I am concerned that the hospital in my network does not do these types of surgeries on the regular and after reading many of the posts I am questioning everything. I am unfortunately not in network with Mayo in Jacksonville and my network does not include any providers that have a Multidisciplinary Team dedicated to NETS. Any thoughts appreciated on how I can move forward out of being frozen with fear that I'm making huge mistake going forward to this surgery.

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

Turkey | @tomrennie | Aug 21, 2023

In reply to @ricki8 "It might be faster to get the right specialist and treatment." + (show)

Thanks. I never had that option. I never thought of that.

ricki8 | @ricki8 | Aug 21, 2023

You also might want to join Lacnets (they specialize in NETs). And look into this doctor speaking on clinical trials.
https://www.lacnets.org/aug2023?blm_aid=262552577

Turkey | @tomrennie | Aug 21, 2023

In reply to @ricki8 "You also might want to join Lacnets (they specialize in NETs). And look into this doctor..." + (show)

I am a textbook stage 4 pNET person for CAPTEM. After 12 monthly cycles, it is still working. Thanks for sharing. We never know what our future holds.

ricki8 | @ricki8 | Aug 21, 2023

Hi,
I am assuming that pNET is for Pancreatic cancer? I was told that as we all respond differently, they will try one treatment drug and if that doesn't work, then they try another. I will mention Captem to my Oncologist. Good to hear it's working for you. I just had my first injection for Stage 4 Liver cancer (started in sm. bowel 3 days ago and I have to play the waiting game.

Turkey | @tomrennie | Aug 22, 2023

In reply to @ricki8 "Hi, I am assuming that pNET is for Pancreatic cancer? I was told that as we..." + (show)

Waiting is some times the hardest part. Pnet is the acronym for pancreatic neuroendocrine tumors. Mine have spread to my liver.

ricki8 | @ricki8 | Aug 22, 2023

In reply to @tomrennie "Waiting is some times the hardest part. Pnet is the acronym for pancreatic neuroendocrine tumors. Mine..." + (show)

I'm curious - do you have lesions in your liver that are considered cancerous? While 'waiting', one of my lesions grew 2 cm. in 2 months. Unfortunately, there is so much unknown re: NETs. Likely, that is why we have to wait.

Turkey | @tomrennie | Aug 22, 2023

In reply to @ricki8 "I'm curious - do you have lesions in your liver that are considered cancerous? While 'waiting',..." + (show)

Yes. "Innumerable" lesions. That growth isn't normal. Do you know your ki-67 number? The Ki-67 percentage score is defined as the percentage of positively stained tumor cells among the total number of malignant cells assessed.

stevestenberg31 | @stevestenberg31 | Aug 22, 2023

In reply to @ricki8 "5 months ago, I had a 'gut' feeling (no symptoms) and chose to pay for a..." + (show)

How old are you? Why is surgery not an option ? Im 55yr old male. I was diagnosed with the same January 2023. I started Somatuline 2/15. I went to the ER 4/20 bloated and in pain. B/c the SINET was blocking my SI I had SI resection, 2.5cm NET, the GB, and 8 lymphnodes removed. I feel great now and gained 15lbs since. Im exercising daily etc.. The NETs in the liver haven't changed, im being told after 2 subsequent MRIs. Hang in there🙏.

taneall | @taneall | Aug 22, 2023

Here is an example as to why a NET specialist is necessary. My husband had an emergency hernia repair that the surgeon on call at the ER happened upon a small tumor in the small intestine that he removed and resectioned the SI. It was NET primary source. We then got a NET specialist both oncology and a surgeon. CT, PET, Blood work lots of research on the cancer. It had metastisized to the liver and lymph nodes. Surgery was done to resection the liver and remove lymph nodes, part of the surgery they removed his entire small intestine to FEEL for other tumors. 5 more tumors were found on the outside of the SI, 2 feet removed and resectioned. They did not show up on any scan, too small. I am not confident a surgeon not familiar with NET would do that. Just our experience. Also, look into the NET research foundation. They have lots of information and videos on the cancer. It helped us to get educated about it. It's a journey! Hoping for a good outcome for you.