Neuroendocrine Tumor - no treatment plan method

Posted by meleve @meleve, 3 days ago

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.

Teresa, Volunteer Mentor | @hopeful33250 | 2 days ago

In reply to @meleve "Thank you so much for this helpful information. I will definitely seek a second opinion and..." + (show)

I'm glad that you will be seeking a second opinion, @meleve. A second opinion is important with any cancer diagnosis and given that NETs is a rare cancer, it is especially important to connect with a NET specialist.

For your information here is a link to some information about the variety of tests that are done to diagnose as well as follow-up with NETs. The link is from the Carcinoid Cancer website, https://www.carcinoid.org/for-patients/diagnosis/diagnosis-and-follow-up-tests/.

I look forward to hearing from you again. Will you continue to ask questions and share updates?

stevestenberg31 | @stevestenberg31 | 2 days ago

In reply to @meleve "Severe diarrhea where I need to be near a washroom at all times, stomach pain in..." + (show)

This sounds like a blockage they probably missed in the scan. I had a SI NET partial blockage for months until it was removed in an emergency surgery. I was told no blockage b/c I was having bowel movements. Type and frequency matter. I would get a different doctor.

lindabees | @lindabees | 2 days ago

I agree that you need to see a net specialist. The fact that your doctor doesnt consider this cancer is evidence on its own that this is not the doctor to be seeing. Thus is still a fairly rare cancer and many doctors don't have the needed knowledge tonproperly treat or follow it. Additional scans such as MRI and gallium or copper pet scan is standard, especially since you have symptoms. Somatastatin injections could help with that.
The fact that it is grade 1 with such a low ki67 is great news!
You can search for a specialist by state at
https://netrf.org/for-patients/neuroendocrine-tumor-doctor-database/
Best of luck to you!

fraaseo | @fraaseo | 2 days ago

In reply to @meleve "Ok thank you. That’s my fear too as the pathology report said resection is recommended. I’m..." + (show)

Definitely get a 2nd opinion & see a NETS surgical oncologist. Your symptoms are exactly like I had; vomiting, horrible diarrhea & abdominal pain that would double me over. I had a small bowel obstruction, mine was also in the mucosa/submucosal, 4 of 24 lymph nodes were removed. I had no further treatment (except for CT scans/bloodwork/PET scan) every 6 months until 2 years later & cancer had metastasized to liver, abdomen, peritoneal lining, gallbladder, diaphragm, appendix, that led to another painful surgery. Started Octreotide injections 3 wks after surgery. You have to be your own advocate based on how you feel & symptoms! I think Drs sometimes tend to lump patients together based on their experiences with other patients. Get a 2nd opinion & share what you find out. I wish you the best!

kim1965 | @kim1965 | 1 day ago

In reply to @fraaseo "Definitely get a 2nd opinion & see a NETS surgical oncologist. Your symptoms are exactly like..." + (show)

I 100% agree with others, 2nd opinion with a NET specialist, and even better would be a NET Specialist that is part of a multi-discipline team. Our initial Oncologist just retired, and in his 40 years of service in our area, my wife was his 2nd case! So he referred her to a team which more than likely gave her great chance to live a full life after a stage 4 initial diagnosis. You got this and we all are here to tell our stories in the hope that you make the best decisions for your long term health!🙏🏻

gustavo1975 | @gustavo1975 | 1 day ago

In reply to @meleve "Yes the biopsy results came back as neuroendocrine tumour g1 net ki 67 under 1% but..." + (show)

Hello, I hope you are well. I am not an expert, I only accompany my wife on this trip of Neurondocrine tumors, I would advise you to get a second opinion with an expert in these topics, It seems that it has almost no aggressiveness tumor, small and could be removed and perhaps with that, you solve the problem. Don't let yourself be, and please be proactive with your doctors. Good luck, I hope you tell us how this story continues from here on out. Best regards.

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helloitsme | @helloitsme | 1 day ago

I also had a grade 1 NET removed from my cecum during colonoscopy. I was referred to a specialist gastroenterologist who did another colonoscopy to make sure it was all removed. He told me that all the tumor was removed and I was as good as new and not to worry. But I continued to have severe diarrhea and weight loss so I asked for a PET scan. No oncologist or any of the GI Dr's would order one, saying it was not needed and insurance would not pay if it wasn't needed. I demanded to have a PET scan and said that I would pay for it myself if they would order it. Finally my oncologist ordered it. The NET in my cecum had metastasized to 2 lymph nodes, my liver and my heart!!! I live in Texas but go to Mayo Clinic in Phoenix...what a wonderful place! It was recommended to me to have a bowel resection but I chose not to have that and have been on Lanreotide injections every 28 days for the last 2 years. It has helped my diarrhea immensely. I've never had any flushing. I have CT scans and MRI's every 6 months at Mayo that show there have been no new tumors, and the ones I have in cecum, lymph nodes, liver and heart are stable with no new growth. I consider myself very lucky, but I know that eventually I may have to have resection and heart surgery. I just live every day with gratefulness and thank God that I'm alive. I also watch what I eat to help keep the diarrhea away. You can find dietary recommendations on netrf.com. I'm sending positive energy your way and praying that you find the answers you're seeking!

helloitsme | @helloitsme | 1 day ago

Oh, and my insurance did pay for the PET scan! =D

mimighosh | @mimighosh | 6 hours ago

Hi,
my husband was diagnosed last year with grade 1, stage 4 neuroendocrine tumor. We found out that for initial diagnosis the CT scans were not that useful ( although they are good for follow ups). MRI of the liver, followed by biopsy and a PET Dotate scan was what was needed for confirmation. He is on monthly Lanreotide injections and been stable with minimal side effects, I agree with everyone here..please seek out consultation with a NET specialist.

Teresa, Volunteer Mentor | @hopeful33250 | 5 hours ago

In reply to @mimighosh "Hi, my husband was diagnosed last year with grade 1, stage 4 neuroendocrine tumor. We found..." + (show)

Hello @mimighosh,

I'm glad that you posted an update about your husband's treatment and that you encouraged others to seek a consultation with a NET specialist. It sounds as if the Lanreotide injections have not resulted in a lot of side effects. Has your husband's medical team suggested any other treatments?