Welcome to the NETs Group! Come say hi.

You mention Octreotide and ability to avoid so far. This has been recommended for me but cost prohibitive despite Medicare and supplemental insurance. Not too interested in giving myself 3 injections a day either. What made you want to avoid Octreotide?

Hi Angela! I would really like you to get ahold of copies of all your tests and scans and reports and keep a journal of your journey. We have 3 weeks to help you get ready for major surgery.

Have you done any research about the type of cancer that you have?

lol, not my kind of present for a 50th either. What else did you get?

Do you live near Decorah? They have live bald eagle cams. Do you know of them?
https://www.raptorresource.org/birdcams/decorah-eagles/

I’m from NW Iowa! So glad you are feeling good!!

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..