What is your neuroendocrine tumor story? Let's share!

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Patients Neuroendocrine tumor

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Hello everyone,

How are you today? 

I thought I would open this discussion so that we can get to know one another better! 

So, what is your neuroendocrine tumor story?
When and how were you diagnosed? Where are your tumors located? Are they malignant or benign? What symptoms did you have that let you know something was wrong? What treatments have you tried? And how are you today?
@Cara_4278@Wendy101@CheryleAnn@Daddio@vijayranjan1964@linda1123@Saskia@Princess69@bberg2007@BeautifulDisaster@Ceckersley@Dawn1970@Living123‍ 

Feel free to share your story, experiences or advice with us here!

Take care,
Courtney

Beginning of the discussion - 7/23/20

What is your neuroendocrine tumor story? Let's share!

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@Courtney_J Hi, I have it mostly in my digestive system. I was repeatedly having diarrhea, vomiting and pains in my stomach and I was losing a lot of weight, so I went in and after all the tests they found my tumors. I guess I'm lucky in that it hasn't really spread beyond my digestive tract, but I still have a lot of uncomfortable symptoms. It's not really operable so I'm on Sandostatin to try to control the hormones and diarrhea.

What is your neuroendocrine tumor story? Let's share!
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I had a "spot" show up incidentally on a abdominal CT for something unrelated. I had no symptoms, but had a 1.8 cm typical net. I had surgery to remove it & no future treatment besides follow up scans & bloodwork every 6 months for life. I respect that it is a tricky & sneaky disease that can pop back up.....but consider myself lucky that it was found early. Best advice I ever got was see a NET specialist!!! My regular onco was well meaning, but not highly trained in this rare form of cancer. You deserve to see the best!!

What is your neuroendocrine tumor story? Let's share!
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Sigh.  Hello everyone.

I was having some rectal pain and thought I had a hemorrhoid...  My doctor wouldnt see me because of COVID, but eventually I got in, and it turned out to be a tumor.  I'm a stage 4, with mets in my liver and lung.

Although i was diagnosed back in May/June, I'm still only coming to grips with it.  I still cant believe it's happening to me.   Three chemo treatments in, though, and other than infusion weeks, feeling pretty damn good and quite strong.  I'm lucky in that my symptoms, at least thus far, are relatively minor.

I've a great deal of cognitive dissonance from how i feel today vs my prognosis and grim outlook.  I'd love to hear about how others are dealing with that.  My survival odds (median 1 year, 5% survive 3 years) make my head spin.

What is your neuroendocrine tumor story? Let's share!
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Hi, my sister was diagnosed a few years ago with a NET attached to her intestines. It had spread to the lymph nodes on the vena cava. They managed to successfully remove the tumor (which was apparently the same size of my 6 year old niece's head) along with one lymph node and 15 inches of intestines. Apparently it was too difficult to remove the other affected lymph nodes so they put her on chemotherapy. The oncologist at the time told us her life expectancy was only about a year, and here we are a few years later. 

@Paulboo‍ I obviously can't fully understand what you're going through since I don't have it, but seeing my sister going through what she has and still is going through I can imagine. She definitely has her good and bad days, in and out of chemo, especially with her young children. At one point she saw a therapist to help her work through what she was feeling. I'd say lean on your family and friends as much as you can. 

What is your neuroendocrine tumor story? Let's share!
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@CLE1974 Thank you so much.  This really helps brighten my spirits.  I'm told what I have isn't operable and that I'll be on chemo for good now, but luckily, at least so far, I've been tolerating it well.   Like your sister, I intend to beat the odds.  I'll put in some extra good vibes and send them her way tonight. 

What is your neuroendocrine tumor story? Let's share!
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Hi, I was diagnosed in 2017 with small intestine NETs. I'd been having really horrible stomach pain and diarrhea and I was losing weight like crazy. I thought it was just a never-ending stomach bug or something, but nope! After all the doctors in the world it felt like and all the tests it was cancer. I had some of my small intestine removed and a hemicolectomy. Ever since I've been really struggling. 

@Paulboo Keep your chin up, you're not alone in this! Sending you my best wishes!

What is your neuroendocrine tumor story? Let's share!

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I was having issues with diarrhea for awhile, I thought it was stress induced, on a routine colonoscopy they found an NET. in the distal ileum. On February 20, 2018 I had a colectomy, removing distal ileum, ileocecal valve,appendix, part of the ascending large colon, 19 lymph nodes, of which one had an NET also. No chemo, the only treatment was Cholestyramine drink three times a day. Follow up with oncologist with CAT scan, 24hr urine for 5HIAA and colonoscopy.

l still suffer stomach pain, cramps, gas , diarrhea with episodes of incontinence two years later. It has definitely impacted my quality of life.

What is your neuroendocrine tumor story? Let's share!

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10 years ago there was a finding of a mass in my mesentery but surgeons said it was inoperable and risky to biopsy so I didn’t pursue. I was told that area couldn’t have radiation and chemo would be out. I hoped that it was benign and wouldn’t grow enough to cause problems. I started having bouts of significant gut pain and docs weren’t sure why. Was it my gallbladder, etc etc Was it the mass?
Periodically I would end up in the emergency room with intolerable pain. No diagnosis was ever made to explain it. Pain meds were not helpful at all with controlling pain episodes. I started having to modify my diet in hopes that would be helpful. After some years, the pain episodes increased in frequency and duration and I wasn’t free to be far from home. I went to doc to see about the hot flashes I was having and it led to finding of tumors in my liver, NET diagnosis. Surgeons said mesentery and liver tumor were inoperable and the best they could offer were the hormone controlling injections. My oncologist sent me for another opinion on surgery to at least ablate the liver tumors which led me to a surgeon who specializes in NET and said my mesenteric tumor and liver tumors were operable. January 2020, part of small intestine sacrificed to remove the mesenteric tumor and others that were found. 50 tumors removed, my gallbladder, ovaries, and a majority of the liver tumors. No more gut pain. 
My suggestion is not to take the word of general surgeons but go to the few surgeons that do this all the time. If I had done this 10 years ago, if wouldn’t have spread so significantly.

What is your neuroendocrine tumor story? Let's share!

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Hi, prior to my diagnosis I had gained a ridiculous amount of weight and kept turning bright red in my face and chest which would last for several hours and then subside.  I also kept fainting at home, waking up in an ambulance, then the ER would discharge me after fluids and told me it was syncope ? I went to an allergy doctor during one of my episodes of turning bright red and he sent me for a long list of lab work (I thought maybe I was allergic to something). The allergist saw in my bloodwork a high chromagranin (sp) level and explained Neuroendocrine cancer, and carcinoid syndrome and sent me to oncologist who to this day has not found a tumor, but my bloodwork confirmed I had it.  For treatment I started monthly injections of octriotide   And it helped some with my symptoms but the fatigue and depression is awful. After my shot last month, My 5th, I ended up with hives at the location of the shot and then all over on and off so I chose not to have the 6th shot.  My chromagranin has come way down but I’m not sure what he’s going to do going forward.  I have a video appointment with him Friday.  It’s really frustrating being in so much pain and not knowing so much.  So that’s my story .. 

Gracie