Newly diagnosed - neuroendocrine tumor in intestines

Hello @wagneriandreamer and welcome to Mayo Connect. I'm sorry to hear of your recent health issues and the problems getting a diagnosis. If in fact, you have been diagnosed with a neuroendocrine tumor I would encourage you to seek a consult with a NET specialist.

If your insurance does allow out of state second opinions when there are no specialists in your area, I'd encourage you to consider a second opinion (either in-person or a virtual meeting) at a facility nearby. In Arizona there is a Mayo facility where there are NET specialists. If you are interested in getting an appointment there here is a link to information about appointments, http://mayocl.in/1mtmR63.

There is also a NET specialist in Colorado, Dr. Eric Liu, who is with Rocky Mountain Cancer Centers, https://www.rockymountaincancercenters.com/.

I know that saying to relax as much as possible is not easy when you are facing an unknown, but I'd encourage you to do just that. Become proactive in learning as much as possible about NETs. Ask good questions of your medical team and seek a second opinion when possible.

Will you let me know of other questions or concerns and especially let me know when you have surgery scheduled?

It’s never to late you come to the right place , I’m a Neuroendocrine survivor I had surgery to remove a tumor in 2011 from my small intestines and I didn’t know what it was I suffered with stomach pain for years and was misdiagnosed with IBM , fast forward 2022 the tumors spread ,I was told carcinoid cancer is a slow growing cancer by many oncologists and it was from 2011 to 2022 I had no problems , I understand the fear you have. the surgeon that wanted to check the endocrine first , must feel like your case is not life threatening but with the continued growth you have to be proactive and seek second opinion, I pray you get resolution soon

Suppose to be in surgery at this very mini here but yesterday they called and rescheduled it for 2 weeks from today. 2 more weeks of crying and worrying. I have an appt Thurs with my surgeon for reassurance and to just talk. Now waiting on my 2nd 24 HR urine test to come back....I think that's the only test that is holding surgery up. Do you know how important it is to have a dopamine plasma test before surgury??....that's the only part of the labs they tossed out because lab sent it in improperly and endocrinologist never asked for repeat draw.

I never heard of that test I have to google that , what I can tell you is stressing out about it is only going to make you go crazy , and can lead to other medical problems, I’m glad your going to speak to your surgeon so he can give you some peace of mind 🙏🏽 hang in there , I get another cat scan November 7 and I pray the tumors on my ovaries and liver haven’t grown anymore since I’ve been getting the sandostatin shots , my husband and children have been a good support system for me , but this support group gives me the knowledge I need to combat this condition I have my tears but I don’t allow them to consume me I have to be strong ..

@wagneriandreamer, just checking in on you. I hope you got reassurance and further clarification at your consult with the surgeon today. Did you discuss the results of your tests? How are you feeling?

I feel much better after talking to the surgeon again. My 24 HR urine results are in but the endocrinologist hasn't called yet. Most of the results were within range but the meta -nephrine was low as well as the epinephrin. according to the surgeons notes from my visit she will be starting me on some kind of blockers before the surgery . hopefully all the pre open stuff is taken care of now and I can concentrate on trying to have a positive attitude.

I appreciate your update, @wagneriandreamer. It sounds as if things are moving right along with the pre-surgery matters.

You must feel more confident upon meeting with the surgeon. Did your surgeon mention what type of surgery you will be having or the length of your hospitalization after surgery?

laparotomy...the tumor is very large. also it's going to be a joint surgery , the gyn surgeon is taking out a polyp as well as ovaries /uterus. guess i won't be having any more kids. (just kidding, i'm 71) Will probably be in hospital 5-7 days.

@wagneriandreamer

I look forward to hearing from you after your surgery. At this time, is there a scheduled date for your surgery?

it's scheduled for the 15th of this month. i will definetly update you. How's that for being positive??? several weeks ago i didn't think it would make it through surgery. i'm really trying to stay positive.