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Neuroendocrine Tumor - no treatment plan method
Newly diagnosed with à neuroendocrine tumor Gr1 K167 under 1%. Was removed during a colonoscopy as it presented as a polyp, but the pathology report showed à Neuroendocrine tumour Gr1. It was small 4mm x 6mm and was into the mucosa/submucosal layer. The pathology report didn’t say benign however the Cancer team says they don’t consider this cancer, which conflicts everything I’ve read and researched. The oncologist also said they won’t be doing any further resection or follow up on the tumour even thought my chromogranin a levels are flagged as elevated and I’m still having symptoms. The CT scan didn’t show any evidence of anything else but the oncologist also won’t send for further testing despite having symptoms. Thoughts on no further testing or treatment plans? Or them saying it’s not a cancer?
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@mcwjr189 I have had no surgeries since I was diagnosed , about a year ago I had Lutathera treatments and the 2 follow up scans showed the large tumors were shrinking and the smaller ones were no longer visible. The only side effect I had was an increase to my fatigue. I go for my one year MRI the first week of May to see if the trend is continuing.. Best wishes for a hopeful outcome for you...
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3 Reactions@vinnie694 Thank you for your response. I know there are a lot of possible side effects but just doing my research. Good luck to you!
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2 Reactions@vinnie694
Is medical treatment an option?? Or is surgery not an option for you??
I want to believe medical treatment can be as effective as surgical treatment. I'm trying the weigh the pros and cons of both. I don't know which would be better given my age and other conditions. I just want to live out the rest of my life and not have to worry too much about anything.
My doctors are encouraging surgery followed by medical treatment with the chance that medical treatment won't be needed after surgery.
I would like to try the opposite. I would like to try medical treatment with the chance the surgical treatment won't be needed. Medical treatment generally can be reevaluated and changed as needed but surgical treatment is generally permanent and can't be reversed.
I have moved away from the idea of "no treatment." I suppose I will decide sooner or later or the NET will decide for me one way or another.
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1 Reaction@dadcue What do you mean by medical treatment? I don't know what that means. Thanks.
@tomrennie
Medical treatment is anything that is non-surgical or non-invasive. Some say "conservative treatment" which might involve medication, physical therapy or lifestyle adjustments. Sometimes it can also mean just living with it and doing nothing other than controlling the pain perhaps to allow someone to have minimal or tolerable pain.
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1 Reaction@dadcue What types of medication? Chemotherapy? Anything else?
@tomrennie
Most medications are probably okay so long as they are research based and it has been shown that the benefits outweigh the risk.
Medications can also be "invasive" to a certain degree. It boils down to how invasive relative to the collateral damage and/or side effects. In my way of thinking generalized chemotherapy and radiation are invasive. Octreotide and Lutathera not as much.
I'm a wimp with IM injections. I would rather have an IV infusion. 🤔