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I recently had surgery to remove NET in small intestine
Neuroendocrine Tumors (NETs) | Last Active: 5 hours ago | Replies (62)Comment receiving replies
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.
Replies to "@dbamos1945 Do you have an autoimmune condition? I'm on a biologic that is keeping my immune..."
@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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@dadcue: I have several autoimmune problems - lack of control of my psoriasis even taking rx, low thyroid levels adjusted with levothyroid, etc. I believe most cancer patients have immunity risks too.
I’m glad to hear you are considering PRRT among your treatment choices.
My understanding is that the 28day Lanreotide drug helps control symptoms (for me it is diarrhea) as well as tumor growth. I have taken it for 5 years in October - can’t say I enjoy it, but as of now I have NO side effects from Lanreotide. I am glad, since it is the only NET cancer drug I am receiving the last 2 years!
As proactive NET patient, I research treatments available and get opinions from peers and professionals, but eventually weigh RISK over REWARD when forced to making medical decisions.
You will make YOUR decision for best treatment for YOUR body!
PS: I have also endured bilateral kidney stones with urethra obstruction = 2 surgeries. It definitely was painful!