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Neuroendocrine Tumors (NETs) Support Group

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794 total results
Discussions (73)
Anyone living long-term with DIPNECH on lungs?
I have written on this form before. I am 71 and was diagnosed with very slow growing neuroendocrine tumors on my lungs 8 years ago....
Last active: Apr 23 10:55pm
DIPNECH (diffuse idiopathic pulmonary neuroendocrine cell hyperplasia)
I was diagnosed with DIPNECH a few days ago, following lung biopsies. I will be having a second PET scan, called Detectnet Dotatate on August...
Last active: Dec 28, 2024
Anyone have a small pancreatic IPMN cyst that turned out to be cancer?
Have CT scans every 6 months to monitor both recurrent breast cancer and neuroendocrine lung cancer. CT showed 7 mm cyst that looks like side...
Last active: Nov 27, 2023
Anyone have Prophylactic Cranial Irradiation (PCI) for SCLC NETs?
I have cancer f unknown primary. Tumour in neck lymph node with histology type Neuroendocrine with suspected primary SCLC based on pathology of neck tumour.Had...
Last active: Apr 15 12:57pm
Carcinoid Tumorlets Neuroendocrine tumor/Cell Hyperplasia - DIPNECH
Good morning. My prayers and blessings to all on this page of interest. This is a new journey for me. Underwent a lung biopsy due...
Last active: Apr 6 9:05am
NIH clinical study looking for the gene causing carcinoid cancer
My nephew recently became the third family member to have a NET diagnosis - his a Merkel Cell carcinoma. My father's was carcinoid of the...
Last active: Aug 13, 2017
Already on oxygen - diagnosed with DIPNECH: What happens next?
Most of what I am reading about DIPNECH deals with people who have not progressed as far as I have. I've been on supplementary oxygen...
Last active: Feb 4 6:28pm
What questions should I ask oncologist tumor types and chemo treatment
77 yrs old, no symptoms, diagnosis not clear. NET found in LL lung and lymph nodes in upper LL. Dotatate G scan no involvement in...
Last active: Mar 19, 2024
First Lanreotide Injection: Any tips about diet and side effects?
Good morning, I am an 81 yr old female & was diagnosed with stage 4 NETS in my liver metastasized from my lung in Dec...
Last active: May 5 7:18pm
My journey to here...
Hi, my name is Anita. I found out I had lung NETs in March this year. I was sent for a CT scan to check...
Last active: Jul 25 8:23pm
Merkel Cell Carcinoma: Immunotherapy while on antirejection meds
I was diagnosed with MCC and had surgery and followed with 30 treatment of radiation on the right side of my head, cheek and neck.The...
Last active: Jun 6 11:05pm
Neuroendocrine tumor: What tests are used for diagnosis?
I had chromograinin A test done which was very high and 5-HIAA been waiting for results for over 2 weeks, I have a lot of...
Last active: Feb 17, 2023
Too good not to share
I came across a blog this morning that was “too good as not to share”. Let me preface this with the knowledge that I was...
Last active: Jan 24, 2023
To get genetic testing, or not?
I've been on the fence whether to have genetic testing. My concern is how it might affect my future insurance coverage, and possibly, that of...
Last active: Mar 7 11:21am
Carcinoid tumor of the appendix.PET scan results
Hi everyone i was diagnosed w a carcinoid tumor of the appendx. It was removed 8 m again along w my rt colon. Fast forward...
Last active: Feb 21, 2023
Might we have to Travel Twice to Mayo?
We are traveling to Mayo from Indiana. My wife needs surgery to remove a carcinoid tumor from her right lung. We have an appointment for...
Support Group: Visiting Mayo Clinic
Last active: Nov 14, 2022
Liver masses found on CT Scan
Hello all, I wanted to start a discussion on a finding from a CT Scan I had yesterday and hope I am in the right...
Last active: Jan 23 7:49pm
Possible NET with No Evidence of Tumor: Mediastinal Mass
Hello All! I have had flushing for several years with alcohol, stress, emotions, heat/exercise, and some other foods. I also have cyclical diarrhea. In the...
Last active: Nov 2, 2021
Has anyone had experience with a Liver Transplant that has NET cancer?
Has anyone had experience with a Liver Transplant that has Neuroendocrine NET? My wife after chemo, surgery, PRRT, etc was suggested my our medical team...
Support Group: Transplants
Last active: Feb 28 8:23pm
Large Appendiceal NET, well-differentiated
Does anyone have long term experience with larger appendix tumors? Especially women in relation to gynecological issues? My appendix tumor was well-differentiated and slow growing...
Last active: Apr 20, 2024