1. < Neuroendocrine Tumors (NETs)
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I recently had surgery to remove NET in small intestine

Posted by hans051275 @hans051275, Feb 12, 2025

They did a rt hemicolectomy and small bowel resection. They also did a wedge resection of my liver. They removed all of the tumor. Liver pathology came back clear. What concerns me is 7 out of 20 lymph nodes came back positive and they are telling me there is no treatment. They said high reoccurence and to just do scans and lab work every 6 months. Is this true no treatment just wait for reoccurence???
--Well-differentiated neuroendocrine tumor, grade 2.Tumor is 1.8 cm in greatest dimension.
Lymphvascular invasion is identified.
Perineural invasion is identified.
Number of lymph nodes examined: 20.
Number of lymph nodes involved: 7.
Maximum size of metastasis (glass slide measurement): 4 mm

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jerrydanhuffman | @jerrydanhuffman | 17 hours ago
In reply to @dadcue "@jerrydanhuffman Wow ... I have daughters but so far they haven't intervened on my behalf. They..." + (show)
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@jerrydanhuffman

Wow ... I have daughters but so far they haven't intervened on my behalf. They already think somebody needs to take care of me. I just turned 72 and my age is my best excuse to not have surgery. I won't tell my daughters how old you were when you had surgery. I have never smoked but I have some other vices so I won't be judgmental.

I have an enlarged prostate that is pressing on my bladder and makes it feel like I need to pee. My prostate isn't a problem except that it takes a long time to pee. I'm a retired nurse and have inserted Foley catheters into people. I was thinking if I ever needed one, I would do it myself rather than let someone else do that to me. I would use a smaller sized catheter because I know it is difficult to get past the prostate sometimes. More than a gallon of urine is too much to drain all at once.

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@dadcue
I quit smoking on the first day in the ER and haven't smoked a single cigarette in 17 months. I will endeavor to continue that success, all the time being aware of how fragile a situation that is. Thank you for your lack of being judgmental. While in the hospitals I always asked physicians to find something wrong with me that wasn't attributed to having smoked cigarettes. They did. NET.

I had a Foley catheter for 4 months - a long time. I never inserted one and when the urologist advised me to remove it myself, I was quite reluctant but did so. I have taken tamsulosin (Flomax) since almost the first day in the ER. Two nights ago, I slept for 9-1/2 hours without having to get up for urination. That is a record, but it is now routinely between 4-6 hours between nightly voiding. When I first started lanreotide injections, it was every hour. That doesn't make for restful sleep. I still see a urologist, but only at 6-month intervals.

My children think I need help crossing the street, but I maintain my lawn mowing, edging, trimming and gardening myself, even in the 100 + degree weather we've been having. I am very ambulatory, do not require assistance and still am able to drive safely, although I don't enjoy it like I did when younger. I recently sold my Ducati motorcycle and do not want another one.

I have always been a rather modest person, and the first catheter insertion was equally as embarrassing to me as having to wear diapers as an adult for the first time. One quickly learns to leave modesty behind, as I have been able to do with catheters and diapers.

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jerrydanhuffman | @jerrydanhuffman | 12 hours ago
In reply to @dadcue "@dbamos1945 Do you have an autoimmune condition? I'm on a biologic that is keeping my immune..." + (show)
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@dbamos1945

Do you have an autoimmune condition?

I'm on a biologic that is keeping my immune system in check. I would need to stop the biologic in order to have surgery. God only knows how my immune system might react to surgery. I also have a history of an aberrant healing process after knee replacement surgery and was told I shouldn't have surgery ever again. I already have a lumbar fusion pending until I decide to do that surgery.

I don't know if chronic inflammation or all the immunosuppressive medications might have contributed to the NET. I was already seeing an endocrinologist for hormone imbalances until I was referred to the NET specialist who is also an endocrinologist. My neuroendocrine system and my immune system have been deranged for a long time. I don't think surgery to remove the NET will change any of this so that is why I don't want surgery. I don't want a bowel obstruction either.

The NET specialist discussed PRRT with me. I was more inclined to try that but it might eliminate the possibility of surgery or make surgery more difficult. I think PRRT is a possibility but I was told Lanreotide would not interfere with having surgery in the future. I opted for Lanreotide first to see what happens. The possibility of gall stones wasn't so appealing. I had a urinary obstruction because of kidney stones so I know any obstruction can be painful.

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@dadcue
I do not have any auto immune disease that I know about, and my surgery was 15 months ago, very shortly after the NET diagnosis. The surgeon said the most serious reason for not waiting was the possibility of bowel blockage and possible rupture requiring extensive and serious emergency surgery. Unlike you, I did not have anything holding me back. and I wanted to keep my children from doing the operation themselves.

My pancreas has been described as "normal" as have my kidneys. My extensive and frequent blood test show values in the textbook ranges except for blood sugars, and I have consistently and constant low platelet count.

I have very little faith in the oncologist I see, and I believe I am a page or two ahead of him in reading the NET textbook. I do not fault anyone. It is a product of living in an area in which there are no NET specialists within a 500-mile radius of my city. The hospital group has a stand-alone endocrinology center that receives high marks, and there is one physician who has some experience with the endocrine side of NET. I am going there on Monday to see if I can set up a consultation. Neither of the two oncologists I've seen have ever mentioned an endocrinologist, but I am proceeding without them.

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