1. < Neuroendocrine Tumors (NETs)
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Neuroendocrine Tumor - no treatment plan method

Posted by meleve @meleve, Apr 30, 2025

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?

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

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Turkey, Volunteer Mentor | @tomrennie | 1 day ago
In reply to @dadcue "@tomrennie Most medications are probably okay as long as they are research based and it has..." + (show)
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@tomrennie

Most medications are probably okay as 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 if given the choice. 🤔

A pill might be better!

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@dadcue I take capecitabine to control my pnet and metastasis. It is a chemo pill.

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mlveal | @mlveal | 13 hours ago

This discussion is helpful to me as a caregiver to a dear friend who has just be diagnosed with a neuroendocrine tumor in the rectum that has spread to the liver and lungs. She found out about the cancer after going to urgent care for what she thought was a cracked rib. It was very painful but I guess that was good because going to urgent care led to a diagnosis. She was hospitalized after being sent to the emergency room and after the doctor saw the results of the CT scan. That was on April 16 so it's day 12 in the hospital and doctors are still trying to get her pain under control so she can go home on oral pain meds. The palliative nurse was in twice today because she is trying different combinations and strengths of pain medicine. If the pain can be managed, my friend will go home and then can begin work with the oncology team to develop a treatment plan. Thanks for any helpful suggestions.

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Teresa, Volunteer Mentor | @hopeful33250 | 3 hours ago
In reply to @mlveal "This discussion is helpful to me as a caregiver to a dear friend who has just..." + (show)
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This discussion is helpful to me as a caregiver to a dear friend who has just be diagnosed with a neuroendocrine tumor in the rectum that has spread to the liver and lungs. She found out about the cancer after going to urgent care for what she thought was a cracked rib. It was very painful but I guess that was good because going to urgent care led to a diagnosis. She was hospitalized after being sent to the emergency room and after the doctor saw the results of the CT scan. That was on April 16 so it's day 12 in the hospital and doctors are still trying to get her pain under control so she can go home on oral pain meds. The palliative nurse was in twice today because she is trying different combinations and strengths of pain medicine. If the pain can be managed, my friend will go home and then can begin work with the oncology team to develop a treatment plan. Thanks for any helpful suggestions.

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Hello @mlveal, and welcome! I'm so sorry to hear of your friend's pain and diagnosis of neuroendocrine tumors. It sounds like she is going through a difficult time, and it is very kind of you to want to help her.

From your post, it appears that she will be meeting with oncologists once her pain is under control. As neuroendocrine cancer is a rare form of cancer, my first thought would be to encourage her to be seen by a neuroendocrine (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/

Before her cancer diagnosis, how was her health? Does she have any other chronic disorders?

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