Welcome to the NETs Group! Come say hi.

dpepsi247 - Good morning. I am so sorry to hear that your doctor was short with you. There is absolutely no reason for this.

I am going to be very stern with you right now, but I mean no disrespect at all. After 25 years of lung cancer. I have learned a lot and I want to help guide you through this so that you benefit the most. OK?

Unless you speak up for yourself no one else will and you will be lost in a system of medical jargon and procedures and feel totally lost. This is your body, your cancer, and your life. Do you want control of it or for others to tell you what you need? Do you have a close friend or family member that can go through this with you as your support? There, I'm done.

Ok, let's move on. Please let's start at the beginning. What brought you to be tested to see what was wrong? Did you have a cough or pain? Former smoker? And what tests have you had so far?

Please feel free to ask me anything. WHat do you want to know?
Merry

dpepsi247 | @dpepsi247 | 1 minute ago
I am still relatively new to this whole journey. I am curious what “type” of cancer I have. I tried to do my own research and am a bit confused. A tumor was found on my left lung. Would you call it Carcinoid Cancer, Lung Cancer, or Neoendicrine Cancer?
I tried to ask my oncologist the other day, but he wa a bit short with me and I don’t like to speak up. I am just trying to understand more about this whole thing. THANKS!

I am still relatively new to this whole journey. I am curious what “type” of cancer I have. I tried to do my own research and am a bit confused. A tumor was found on my left lung. Would you call it Carcinoid Cancer, Lung Cancer, or Neoendicrine Cancer?
I tried to ask my oncologist the other day, but he wa a bit short with me and I don’t like to speak up. I am just trying to understand more about this whole thing. THANKS!

Hello. I am Angela and I am from NE Iowa. When I was thinking of things I wanted for my 50th birthday, a carcinoid tumor definitely was not on my list! It has really been a whirlwind process the last few months. I am not sure when I was first diagnosed with this tumor, but it became very real when I was told I needed to have surgery! In my mind I was thinking “ok, I’ll schedule it a few months out so I have time to accept it. “ I said I wanted to put if off as long as I could and was told, “Ok, your surgery is in 3 weeks. I have never had major surgery so it was a double whammy when I found out I was having the lower lobe of my left lung removed.
I am one moth out from surgery now and feeling good.

I found out today that I have 2 NET’s in my lung. Found inadvertently while scanning for my cecum cancer.
I now have both unrelated to each other.
Looking for support of info on lung resection and colon surgery.

Interested in hearing from those who have had experience in the NETs community with Sandostatin injection therapy.

Hi, I was recently diagnosed with, carcinoid syndrome, the tumors (NET) started in my small intestine and metastasized to my liver (multiple spots). The spots were found during a routine cat scan for diverticulitis. It’s been a roller coaster ride since the diagnosis Dec.2022. Just had my first treatment of Lanreotide, at Mayo Jacksonville Florida, no side effects so far..

Thank you for your response! I am told I do not have carcinoid syndrome, yet I experienced face flushing the past few years. As for diarrhea, 3 years ago I had a section of colon removed due to on-going diverticulitis. I developed an infection post op, which led to a 9-12 month battle with c-diff, so I’ve definitely had it on going. Interestingly no face flushing or diarrhea issues since surgery on Jan 6.
As for follow up, I’m scheduled for an MRI 3-4 months post op, and I think thereafter it will be every 12 months.

Hello @rushlakekathy and welcome to the NET discussion on Mayo Clinic Connect. I am glad that you found this forum, it is a great help to connect with others who are also dealing with this rare type of cancer. I'm sure you will find encouragement and support.

I have had three surgeries (over a 20-year period) for NETs in the upper digestive tract, specifically in the duodenal bulb. I have had no symptoms, and these were found during an upper endoscopy. I now have endoscopies every other year. It has been about six years since my last surgery.

My treatment involves following up with endoscopies, having blood drawn to check for serotonin levels as well as liver/pancreas functioning and MRIs of the liver and pancreas. I have cysts in the pancreas and lesions on the liver, but they have remained unchanged over several years.

Have you experienced carcinoid syndrome (symptoms are often facial flushing and/or diarrhea)? Also, what are your doctor's recommendations for follow-up?

Hi katballoo!
I am so glad you will be going to Mayo in Rochester. You couldn’t be in better hands and hopefully they will be able to see if any of these recent skin issues are related. I have a pancreatic NETS and mine was discovered through and ESU Endoscopic ultrasound, that I was having on my liver. They were able to biopsy the NET and hopefully you will find out your Stage and grade soon. I am KI-67