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I recently had surgery to remove NET in small intestine
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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HugInterested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.
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I don't know why they said liver?? I have not been on anything for my stomach. I agree it's a awful feeling just waiting for the next one to appear!
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1 ReactionIn my case: I was told that the NET in small bowel (near duodenum) metastasized to liver which is the natural blood flow into liver. NET spreads at a micro level (imagine a dandelion seed) attaches and can grow to a size that can be identified by MRI (with & w/o Eovist Contrast) in liver.
If this happens to you don’t Freek Out when they say you are at Stage IV… this means that your NET disease has metastasized to another organ. We hear Stage IV and think of “regular” cancers where many are near death. Our NET cancer usually behaves much differently with some tumors staying Stable and only need to be watched carefully, other tumors grow very Slowly!
I hope this helps you stay vigilant in repeated scans of your abdomen/pelvic/liver region. There are some very effective NET treatments and it is wise to react sooner than later if tumors get larger (my opinion).
I will also share my experience that “cancer centers” give us the most accurate radiologist reports of our situation, particularly if they have prior scan discs available for comparison with current scan.
We have to be proactive and give our docs info they need to make best treatment decisions. Be grateful!
Best health to you!
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8 ReactionsLook into a second opinion.
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2 ReactionsCheck with all cancer centers for NET Specialist for consultation/2nd opinion on disease and future treatment. This may be virtual, but if not take all your records with you to appt. You will get superior care and advice.
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1 ReactionMy oncologist said because the liver and colon feed from same blood supply??
Hello @hans051275 and welcome to the NETs support group on Mayo Connect. I agree with @dbamos1945 in getting a consultation with a NET specialist. If you live near any of the three Mayo locations, that would be a great place for a consultation. Here is a link with information about obtaining an appointment, http://mayocl.in/1mtmR63.
I have had three surgeries for NETs in the duodenal bulb. These surgeries have been over 20 years. This type of cancer is often slow growing and you need to be aware of the need for regular surveillance through CT scans, MRIs, or other tests that your oncology team may recommend. There have been many advances in treatment for NETs over the past 20 years since I began this journey.
How are you feeling? Are you able to eat OK?
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1 ReactionI am feeling good now and yes I can eat. They are scheduling me for ct scans every 6 months.