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Discussions (212)
Carcinoid Crisis Questions
My wife has well differentiated, grade 2 stage 4 NET to the terminal illeum (which was removed) w/ mets to the liver and pancreas which...
What should I do? Carcinoid symptoms but no answers.
I'm a 41 yr old male and for the last 16 months I have had almost daily flushing (face, ears, chest, upper back/shoulders) episodes along...
What’s the best care option for live alone senior during radiation?
Biopsy results for suspicious Merkel Cell carcinoma on nose expected next week. I’m 75, live alone and wondered if it’s best to invest in temporary...
Should I want more treatment after pancreatic nets with lymph nodes?
I had two 2 cm grade 2 (well-diff) NETs removed with a distal pancreatectomy and splenectomy. So, stage 3 pancreatic cancer. Before surgery, they thought...
Blood Clots, DVT and Neuroendocrine Cancer - Be aware.
Last week I woke up with a swollen arm and went to the ER as I was also very weak. I was diagnosed 9/24 with...
Small Bowel Neuroendocrine Cancer, Metastasis to Mesentery Recurrence?
I was diagnosed in ‘21 (51 y/o) with SB net and metastatic tumor in the mesentery lymph nodes. All successfully resected. The metastasis in mesentery...
My Husband was newly diagnosed with Carcinoid Cancer
My husband was diagnosed with carcinoid on 1/18/17. He had surgery on 2/3/17 to remove 18" of his ileum small intestine (36 small tumors were...
Recovery help from tumor in appendix, appendicitis, and adhesions
Hey all, I’m struggling with pain and could use some support.I had a LEEP surgery 5 months ago which began a daily battle with severe...
Diet restrictions with Lanreotide?
I had my first Lanreotide injection four days ago on Monday, but was not told of any diet restrictions. I've seen that I should eat...
Pain relief when lying flat?
Hello. I was diagnosed with NETs in February 2023: stage 4, grade 2, well-differentiated low-grade primary 5cm tumor in small intestine, Ki-67 5.4%, with METs...
The Roller Coaster Ride of Cancer
Hello to all of you who have had cancer diagnosis and treatments.The past couple of months I have been on a roller coaster ride with...
How I was diagnosed with Parotid Gland Cancer (High-grade NETs)
I would like to share some of my symptoms I experienced when I was first diagnosed with High Grade Neuroendocrine Carcinoma in my parotid gland....
Tumor w/ minor grow with no Octreotide & larger growth w/ the shot
I was diagnosed with metastatic neuroendocrine cancer in the liver 4cm x 3.1 cm in Sept. Grade 2, non-functioning, well differentiated KCI 6-8%. My MRI...
Neuroendocrine insulinoma and MDS
my mom has been fighting a pancreatic neuroendocrine insulinoma, well differentiated grade 3 tumor in her pancreas with metastasis to her liver for the last...
Just diagnosed: Metastatic NETs. Treatment?
Hello everyone. I am new to this site and this is my first post. I had a routine colonoscopy in March and found that I...
Multiple Endocrine Neoplasia 1 (MEN1): What treatments have you had?
My husband was diagnosed with MEM and type one in 2017. He had a modified Whipple surgery in 2018 or they removed his pancreas, Splaine,...
Cu-64 Dotatate PET results show no malignancy. What’s next?
Hi all,I was diagnosed six weeks ago with NET after a small bowel blockage. NG tube and a ton of pain meds relieved my symptoms...
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...
How do you mentally handle reoccurrence?
Hi, I am struggling. I just had my 6 month surveillance mri for my pancreatic net. (It has been 3 years since my distal pancrectomy...
Differentiating Carcinoid syndrome from MCAS?
Hi UK based where mcas is poorly understood I have been diagnoses with autoimmune gastritis in the last few weeks Symptoms over the last few...
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