Neuroendocrine Tumors (NETs) Support Group

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...

My partner has pancreatic NET, grade 2 stage 4 w metastases in liver - she is having first post diagnosis scan after 3 months lanreotide....

I have been diagnosed with PNets grade 2 that metastasized to liver. The past few months I have been dealing with acites. Currently doctor is...

I have recently been diagnosed with a "biochemically active extra-adrenal catecholamine-secreting PARAGANGLIOMA in the right retrocaval/perihepatic region (behind liver) adjacent to the IVC. " Along...

I was diagnosed late February 2025 by liver lesion biopsy with neuroendocrine grade 2, well differentiated. Ga68 Dotatate Pet scan end of March confirmed pancreas...

First scan after 4 lanreotide monthly shots for pancreatic net grade 2 stage 4 w liver (both lobes) metastases. Advice on understanding interval progression and...

Below are links with additional information.https://l.smartnews.com/p-15eSVMB/JS1UQ5Histotripsy treatment, FDA-approved therapy that kills cancer using sound and water, led by team at Providence Mission Hospital | abc7.comhttps://abc7.com/amp/post/histotripsy-treatment-fda-approved-therapy-kills-cancer-using-sound-water-led-team-providence-mission-hospital/15648669/Below...

I live in Panama (a US citizen , now retired) and have been diagnosed with NETS after many tests and biopsy. I have had 5...

has anyone used mayo clinic in Rochester Minnesota for carcinoid tumors. the diagnosis was carcinoid tumors in the liver. I am looking for the best...

Hello everyone. I'm new to the journey. My husband was diagnosed last October with NETS. Surgery was done in January. During surgery seeding was seen...

Recently I had a positive 5-HIAA urine test and a 64 CU Dotatate PET scan that lit up parts of duodenum and found a 4mm...

Hiya. My partner is on her fourth monthly lanreotide & just had scans. They showed significant growth in liver despite the treatment ( grade 2,...

Was diagnosed with NET last year, have been getting Lanreotide injections every 28 days plus Everolimus medication everyday Dr stopped Everolimus in September because i...

Hello I was diagonised with Neuron drone Tumor Cancer April 2024 from having a bowl obstruction surgery which was the tumor in the intestines that...

I am looking for anyone that has dealt with this diagnosis and received treatment. My husband was diagnosed July 2018 and we’ve had two reoccurrence...

There seems to be a general distrust of all doctors. That is sad. No matter how much homework I do, no matter how much I...

Hi,I live in Canada and I wonder up to how much it can cost for a possible surgery.I have a mixed adenoneuroendocrine carcinomas (MiNEN), with...

After 8 months on lanreotide I am getting the diet down and no longer losing weight, but my hair loss is beginning to be noticeable....

Hi. I am diagnosed with NET Ki 80% potentially pancreas head and metastas liver. Looking for similar patients and willing to pay specialized doctors in...

5 days ago I had y90 embolization to the liver for metastatic nonfunctional NET. Severe pain and vomiting after procedure. Had to be admitted for...