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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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@eesnerd and @hopeful33250
Thank-you both for your responses.
My Serotonin and Chromogranin A levels are only 5 times normal and I'm not symptomatic. I'm just wondering what the "first step" for treating this should be. I'm getting phone calls to make "rapid fire" appointments with an endocrinologist, a GI doctor and a surgeon all within the next month or so. My primary care doctor says all these doctors will "work together" but I think having too many doctors won't work that well together.
I don't know what the plan is or what should happen first. They say a biopsy is needed but I'm told there are several different ways of doing the biopsy. I'm also supposed to do a capsule endoscopy but that can't do the biopsy.
I'm grateful for the multidisciplinary approach but I still don't know what the "overall plan" is supposed to be. I don't think any of the doctors I'm supposed to see is a NET specialist. I would think that would be the best doctor to see first.
My understanding is the primary NET and the 2 mesenteric nodes are 'localized" so I guess that means they are operable.
I'm immunosuppressed because of multiple autoimmune conditions. I already see several doctors for my other medical conditions. One of my doctors that I already see is an endocrinologist. I don't think I need to see 2 different endocrinologists. I live where a NET specialist is available at the large University Medical Center that is adjacent to the smaller VA hospital where I get medical care. The VA hospital takes good care of me! Most of the VA doctors also work at the University.
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1 ReactionGo to a NET specialist !
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2 ReactionsMutilple opinions are good. My Nuendocrine tumor has reappeared after 21 years. I had the localized tumor removed in 2004. So I was 21 years give or take a couple years cancer free. So removing the tumor for me worked for 21 years. I only found this recent P-Net do to an abnormal Chromogranin A annual test.
If I could I would consider surgery again but i cannot have this one removed.
As far as to many doctors. They are all specialists these days and together they can create the proper plan for you.
Good Luck to you.
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3 Reactions@doonman
Why can you not have your recurring NET removed?
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1 ReactionAll the doctors, 3 oncologist and a surgeon believe it's too risky. I had some major remodeling done in my abdomen. But the main reason is there are other hot spots that show up on my Dototate 68 scan so most likely it has spread and at 65 it probably is not worth the risk. I am on Lanreotide injections and currently playing for a draw. Praying for a cure like a lot of us. Research, trials and more testing. Cancer is classified known only to nature and God. But your question was spot on. Take care.
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1 Reaction@doonman
I listened to a seminar from 2021 about NETs. One part struck me as being strange because it said "surgical removal" was the first treatment option for a NET. Surgical removal was contingent on the NET being localized and hasn't spread. For emphasis, it said the second treatment option was also surgical removal.
My primary NET is the distal ileum and localized but it has spread to 2 nearby lymph nodes in the mesentery. Everything suggests the surgical option will be recommended to me next week.
May I ask how much "remodeling" of my abdomen might be done? I'm leaning toward "playing for a draw" and just being treated medically. I currently don't have any symptoms that bother me. The thought of having abdominal surgery really bothers me!
@dadcue
Here is a YouTube channel that has more recent videos on NETs.
--Neuroendocrine Cancer Awareness
https://www.youtube.com/@neuroendocrinecancerawaren6842/featured
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3 Reactions@hopeful33250
Thank-you ... I feel prepared for all of my upcoming appointments. Things are happening very quickly. I'm a retired nurse and worked at UIHC so it's all good!
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3 Reactions@meleve I’m hoping to find out more information as well. I’m having the same problem. With 2opinions I’m still in a lot of pain and now my insurance won’t cover the CREON and it doesn’t feel like the prescription Zenpep helps.
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2 Reactions@ceefer
I see that you have obtained a second opinion. Was this with a NET specialist? There are NET specialists at all three Mayo Clinic locations (appointment information is available at http://mayocl.in/1mtmR63).
If it is not possible to be seen at a Mayo facility, here is a link from the Neuroendocrine Tumor Research Foundation with NET specialists in the U.S.: https://netrf.org/for-patients/neuroendocrine-tumor-doctor-database/page/8/
Often, when a medication is not approved by insurance, the doctor's office can contact the insurance company to request approval for an alternative medication that will be more effective. Has your doctor's office talked with your insurance company about getting the Creon approved?
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