Neuroendocrine Tumor - no treatment plan method

Posted by meleve @meleve, Apr 30 1:43pm

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.

fraaseo | @fraaseo | Apr 30 4:02pm

Assuming because it’s under 1%. My advice is to stay on them & ask for a repeat CT in 3-6 months along with bloodwork. Hopefully they got it all.

Turkey, Volunteer Mentor | @tomrennie | Apr 30 4:34pm

What symptoms are you having?

fraaseo | @fraaseo | Apr 30 4:55pm

What is your Chromogranin A level?

meleve | @meleve | Apr 30 5:09pm

In reply to @fraaseo "What is your Chromogranin A level?" + (show)

135 and the test said normal is under 75 ng/l

meleve | @meleve | Apr 30 5:11pm

In reply to @tomrennie "What symptoms are you having?" + (show)

Severe diarrhea where I need to be near a washroom at all times, stomach pain in the middle of the night and randomly through the day as well as weigh gain which is wild to me since I can barely eat food. I also notice food is not being absorbed.

meleve | @meleve | Apr 30 5:12pm

In reply to @fraaseo "Assuming because it’s under 1%. My advice is to stay on them & ask for a..." + (show)

Ok thank you. That’s my fear too as the pathology report said resection is recommended. I’m also confused while the one oncologist doesn’t consider this a cancer?

Teresa, Volunteer Mentor | @hopeful33250 | Apr 30 6:07pm

Hello @meleve and welcome to Mayo Connect. I can certainly understand your concern after your oncologist said that this wasn't cancer. I would highly recommend that you seek a consultation with a NET specialist to be assured that you are getting the best treatment and follow-up. If you are able to get a consultation at one of the Mayo Clinic facilities that would be good. Here is a link with information on obtaining an appointment. http://mayocl.in/1mtmR63

If an appointment at Mayo is not possible for any reason, then I recommend that you seek out another NET specialist. Here is a listing of NET specialists from the Carcinoid Cancer Foundation website, https://www.carcinoid.org/for-patients/treatment/find-a-doctor/.

I look forward to hearing from you again. Will you post again about your follow up and possible second opinion?

gustavo1975 | @gustavo1975 | Apr 30 6:15pm

Hello. I think the best thing you can do is insist on at least blood tests and follow-up CT scans with contrast or MRI. More than anything, it's for your peace of mind. Best regards.

PS, I read a later message there. As I understand it, what you had was a biopsy. You just said they recommend tumor resection?. Or am I mistaken?

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meleve | @meleve | Apr 30 7:26pm

In reply to @gustavo1975 "Hello. I think the best thing you can do is insist on at least blood tests..." + (show)

Yes the biopsy results came back as neuroendocrine tumour g1 net ki 67 under 1% but it said recommendations were for complete resection since it was in the submuosa/mucosal layer to make sure they removed it all, since it was removed during a colonoscopy thinking it was just a polyp. From what I’ve read ct scans are not always the best for detecting these tumours until they’re usually further advanced?