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High risk surgery. Is it worth it?

Neuroendocrine Tumors (NETs) | Last Active: Mar 29 11:38pm | Replies (40)

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@patrick031621

just facts here and you will have to decide for yourself--- and this was ten years ago--and by the way I am a 21 year survivor and am age 77 now---
My oncologist at Barnes-Jewish in St. Louis suggested I get the two small tumors in my liver removed and sent me to a surgeon for consult and to see what he thought. He explained to me that where they were located were such that if he did it, it would be high risk surgery and mentioned as he described it to me about needing to do things with my aorta. He thought that since at the time it wasn't affecting my life at all at the present time, that he didn't advise surgery. I went with his opinion as I have a great trust for surgeons with skill that don't leap to surgery. A year later I had to have surgery to remove ones with a bit of intestine in lymph nodes because of blockage, work done by this same surgeon for which he described that surgery as a mere plumbing problem. AS for the liver ones, they are still there but haven't grown. With carcinoid surgery, different areas have different risks and I avoid high risk unless I know I will die for sure very soon without it. may I suggest limiting your eating in diet, being pretty much a vegetarian, don't eat out, especially fast foods. I have the tumors in three areas but they just lay there as if dormant and haven't spread. Besides this semi- fasting diet I get octreotide every four weeks. One never knows what works, if anything, but I do believe in this semi-fasting etc.. and the octreotide. Maybe I am just lucky or blessed. But I don't like the idea of high risk surgery anymore than my surgeon did. I figure if he is saying that, it is probably more risky than I can imagine. But it is your life and your call. I wish I could be more help.

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Replies to "just facts here and you will have to decide for yourself--- and this was ten years..."

Patrick, were your tumors NET’s? Who is your oncologist at Barnes?
I was diagnosed with a NET on the head of my pancreas. I am now seeing a NET specialist at Barnes and he has sent me to a pancreatic surgeon at Barnes. The plan so far is it wait and watch the tumor. I will see the specialist March 12, getting another scan to see if it has grown. I live just west of Washington Mo. Do you know of any groups like this locally here. There are two types of surgery for my particular Pancreatic Neuroendocrine Tumor(PNET ). A complicated Whipple Procedure with bad after affects or Enucliation which is less invasive. I’m told my tumor fits the criteria for Enuc except that it is too close to the pancreatic duct. So the surgeon at Barnes said she will not do Enuc. I am going to ask for second opinion from MAYO after result of this coming testing. So many unknowns and so many questions. My e-mail is, charlie@fidnet.com. If you were open to staying in contact that would be great and if not I understand. I am 71 years, grew up in St. Louis (Dogtown). Worked in St. Louis as a Sheet Metal Worker local 36.
Hope you continue to stay well.

I have been fasting now for a month. Not eating till 12pm each day. I have had improvements in my health and general well being.
I had chronic diarrhoea for months going sometimes 20 times a day. That has stopped and my movements are almost normal now.
I’ve lost 5 kilos in that time.
So fasting is great.
I don’t want to have the surgery, but feel if I get this one out I can use lanreotide to control any others that may develop.
Thank you for sharing your journey