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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
@dadcue: Mike I was in similar(but different) decision. My NET is small bowel primary (same blockage risk with tumor progression) with multiple metastases in liver. My surgeon pressed for extensive surgery (like yours), NET Oncologist agreed; however, I chose PRRT Lutathera infusion therapy to reduce size of slow growing tumors dramatically and risk any drug side-effects.
I chose quality of life over quantity. I was fearful of waking up after surgery on a feeding-tube, and facing a world of limited digestion and a LONG recovery. My decision only.
Long story short, after the 6mo PRRT treatments (which the only side effects was fatigue & precautions for 3 days post drug) I had MRI w&wout Evoist contrast about 60 days post last treatment - my tumors had shrunk dramatically & were smaller than at any time! One tumor was & continues to remain stable and many smaller tumor’s nuclei were GONE! Here I am touting this treatment to you in hopes you would have a dido.
Two years later and I still receive my 28 days Lanreotide shot only, hav had NO tumor progression, but I did opt to have repeated MRI’s (as above) every 3 months so my Radiologist and Oncologist and myself stay vigilant.
If you have any questions I can answer- I am here.
Another 2cents: one of our Mayo mentors I believe received surgery for ilium tumor similar to you (maybe Theresa?). Her comments may be invaluable to your decision. Just a thought…
Ultimately, I wish for a positive outcome and know you will make the best decision! dbamos1945
Replies to "@dadcue: Mike I was in similar(but different) decision. My NET is small bowel primary (same blockage..."
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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.