Hello @gapsc and welcome to Mayo Connect

I am Teresa, a volunteer mentor with Connect and I have had three surgeries for carcinoids of the upper digestive tract. When you say, "I know a lot and know nothing at the same time" you speak for most of us with this rare disorder. The information about neuroendocrine tumors (carcinoids) is a growing field, but considering it's rare we all feel a little lost when when receive this diagnosis.

If you are comfortable sharing more, can you tell us what symptoms led to your diagnosis? Do you have symptoms of carcinoid syndrome? How are feeling now that you are taking lanreotide monthly?

We have a few members who also have lung carcinoids and I hope they will join the conversation soon. In the meantime, here is some information about the latest in carcinoid treatment from a conference in Wisconsin that was led by some Mayo doctors, https://youtu.be/B_PEkYN9Yz4.

Here are some of our members, @amyh2439 @tresjur @joannem @gaylejean @lucci50 @derekd @gulzar @joanney @jenchaney727 @dzerfas @lorettanebraska @wordnoid @trouble and @upblueeyes @ahtaylor @heidilynn4 @junebug15 @gman007 @mollie59 @amani79 @collielady @somefan @debf @immmm @kenlucier @somefan @nancymcegg @ajnaudra @meppard @linnythepoo @nigelvw @mgreene @jimdc @jls77 @sharik @tomewilson

I look forward to hearing from you again. Connect is here to support and encourage you!

Teresa

Hello ya all. Had a rough time signing back in, but finally did the deed. Hope it continues to work. To answer your question Teresa. the immediate symptom was a severe coughing episode with blood. that sent me to the ER. I was recovering from an operation which had nothing to do with lung issues. So I knew that something was very wrong. I had been diagnosed with Barretts esophagus a few years before so I figured I must have ruptured a blood vessel. First x-ray showed tumor and was told I had lung cancer. I went into shock. I simply could not believe it. Although I was an x smoker I had not smoked for 40 years. Lung Cancer? The first cancer docs confirmed the news and Drs Doom and Gloom had such pondering looks, and really had a demeanor unbecoming cancer specialists. PO'd me to no end.
Prior to that event though I was told I had Asthma....COPD.....chronic Bronchitis, all to justify coughing and congestion, even Pneumonia. Fatigue etc. That misdiagnosis, very typical for lung carcinoids, prevented earlier detection of the tumor(s). Perhaps surgery was possible 3 years ago or even earlier....earlier?.
Back in the 70s, I was diagnosed with labile hypertension. Monitoring of that condition produced some strange blood and urine test results which confused the Drs attending to me. I ended up in the Lahey Clinic in Boston. At that time only high-speed x-rays, primitive nuclear scans, and sonograms were available for inside viewing. Nothing could be confirmed. The search at that time was for a Pheochromocytoma, another form of NET. Equally evasive and difficult to detect.
In a U-tube interview with Dr. Wollin of Montefiore Hospital in the Bronx, Carcinoids can hide for up to 40 years. If that is true was my initial tumor hiding for over 50 years? Highly doubtful I guess, but it certainly doesn't make me feel too comfortable.
And that was the beginning of it all.
So...I am still here and I am not going anywhere...GAP

Thanks for all of that information, @gapsc

I know so many NET patients who were misdiagnosed for many years before the real culprit of NET was acknowledged. I will be so glad when this disorder is in the forefront of oncologists' minds. With digestive tract NETs the misdiagnoses can be all over the charts and NETs are sometimes not recognized until there are METs in the liver.

You didn't mention if the monthly lanreotide is helping. I hope that it is. Do you still have a lot of coughing and/or pain? Have you ever had the 68 Gallium Scan? You can read more about this scan in one of our discussions, https://connect.mayoclinic.org/discussion/68ga-dotatate-positron-emission-tomography-pet-now-at-mayo-clinic/

I would also like to introduce you to the Carcinoid Foundation's website. Here you can find some good information and perhaps feel a little less alone. They have personal support groups in some areas of the US. https://www.carcinoid.org/resources/support-groups/directory/ I hope that this website will help answer some of your questions.

There are also several Facebook pages for support. They include the Carcinoid Coffee Cafe, Carcinoid/NET Awareness Support Group and others. You can also sign up to receive a daily emails from LISTSERV@listserv.acor.org. There are lots of NET people posting here.

Continue to share as you have questions or concerns. While I probably won't have all the answers, some of our members may have one or two answers along the way. If we don't have answers, we can certainly commensurate with you in the quandary! We have all been there a time or two.

I look forward to sharing this journey with you, so keep posting.

Teresa

I recently discovered that Baylor University Medical Center in Dallas, 1.5 miles from my house, has opened the Neuroendocrine Cancer Research & Treatment Center in the Charles A. Sammons Cancer Center. There has been zero publicity about it. This is the place where, in 2000, three doctors told me a carcinoid was not really cancer and I had nothing to worry about. A small rectal carcinoid — .4 cm — had been discovered during my first colonoscopy. It showed up again in 2010 in the same spot as the first. Luckily, the same sharp-eyed gastroenterologist spotted it and biopsied it, then I had surgery to remove it and a lot of surrounding tissue. I do not think I have any symptoms now, but I want to evaluate this team for myself and, if they pass the test, establish a relationship. I have a colonoscopy every 5 years and a flexible  sigmoidoscopy all the other years, a regimen suggested by a specialist I found in New Orleans in 2005. Every time I have diarrhea or sweat excessively or my face is red, I worry the cancer is back. I would like to feel safe, if indeed I am. My appointment is tomorrow, March 12.