Welcome to the NETs Group! Come say hi.

Hi @ce1b thank you for sharing with me. Did you get referred to that NET specialists through the VA? Right now, all I have a gastroentologist. His name is richard strong through the va. I don't see oncology until this friday coming up. And that will be my first oncology appointment. Just wondering if i should ask for a referral to see someone else...

Hello everyone. I have bilateral Pheochromocytoma's on both my adrenal glands. I live in Oregon. This has been a 3 year ordeal that recently got me a diagnosis about 4 months ago. I'm currently phenoybenzamine currently and am feeling about 60% better but it's a daily struggle. I'm feeling pretty low and I'm pretty sure this is not the worst. I am wondering if I need to be at a tertiary center with bilateral lesions. My doctor has mentioned it but has not pushed it. Anyone here with bilateral Pheos?

Hi, I'm a vet too being treated through the VA. What I have found is that the VA is limited as to their skills and knowledge when it comes to the treatment of NETs.
You are getting good advice from the mentors at this site. Knowledge is your best tool as you progress through your illness.
I have found a NETs specialist here in Phoenix, AZ that is involved in clinical trials. I now have an appointment with him for a second opinion on my treatment plan... My advice is to make sure you are speaking to a doctor that is “NETs” qualified when seek or decide on your treatment plan.
Good luck in your journey. Lower your stress, meditate a couple times a day, stay as physically fit as possible, and prepare yourself for the upcoming proposed treatments. Your body will thank you.

Hello @mrrnet and welcome to Mayo Connect. I'm sorry to hear about your diagnosis of NET but glad to hear that you are getting your energy back after surgery. You mention your night sweats have decreased. Are you taking monthly injections to keep them controlled?

Do you have any follow-up appointments scheduled?

Hello from Indiana. I was diagnosed in August with a NET in my intestine. Pet scan showed a possible spot on my liver. Had surgery in September for the intestine tumor removal. Surgeon couldn’t get the the spot on liver to do a biopsy. I’m starting to get some energy back. My night sweats have decreased since surgery. Has that been a symptom for anyone else?

Hi @amandajro I was wondering what happened to my post 😳. The last doctor I talked to was my gastroentologist. He was the one that gave me the results of my pathology report, calling it a neuroendocrine tumor with carcinoid syndrome. He said that other departments were supposed to reach out to me to start setting up other appointments, but no one has yet. This was on Wednesday, 2 days ago. I have a followup appointment with my gastroentologist on the 22nd of Nov.

Hello @newbienet and welcome to Mayo Clinic Connect. Let me start by saying that I am glad you have reached out for support. Learning bits and pieces of information at a time with an appointment a month out can be very trying, no doubt.

Before I go on, you will notice that I have moved your post into the welcome discussion on NETs so you can more easily meet others and get started connecting. While Connect isn't comprised of doctors who can confirm anything for you, you will meet others who have their own experiences that they can share with you, and you with them.

Members such as @hopeful33250 @lisaonthegoco and @tdylanbrowning have been recent contributors here and may be able to come in and share more with you.

When are your other appointments for bloodwork, pet scan, and urinalysis scheduled for?

Hello @newbienet and welcome to Mayo Connect. I can understand your concerns. I have had three surgeries for carcinoids in the upper digestive tract. My first surgery was in 2003 and there was little information available about this rare form of cancer at that time. My carcinoid was also found during a routine upper endoscopy. As you have several tests coming up, I would encourage you to wait until those results are available. You will have more answers when your doctor has the complete picture.

I see that you posted your pathology report. Unfortunately, this forum is a patient-to-patient network. We are not medical professionals and cannot interpret reports such as this. At your next appointment, I suggest that you bring the report with you and have your doctor explain each line with you so that you have a good understanding of the significance of the report.

As carcinoids are a rare form of cancer, I recommend that you learn as much as you can. Educating yourself will help you feel more empowered to face this disorder and seek the best treatment possible. The Carcinoid Cancer Foundation (CCF) offers a lot of helpful information for patients. Here is the CCF website:
--Carcinoid Cancer Foundation
https://www.carcinoid.org/for-patients/
This website will also provide you with the names of carcinoid specialists throughout the U.S. and worldwide.

Often, when veterans are faced with a rare disorder, the VA hospital will give them a referral to a specialist who is not connected with the VA. If your doctor determines that you have carcinoid cancer, you might consider asking for a referral.

When will your follow up tests be done, @newbienet?

To add, here are my pathology reports...

Hi, I'm new here, and I'm a wreck. I'm a 42 yr old male who had an upper endoscopy done because my ferritin levels (iron stores) were at a 3.3 when it should be at least at a 40. Doctor performed endoscopy and found an abnormal mucosa in my gastric antrum. Did a biopsy on it, and didnreally get a clear answer on it. The doctor called it a well differentiated neuroendocrine with carcinoid syndrome. I'm having flushing in my face and ears, and loose stools for that come and go. Some tingling in the face, and a little bit of abdomen pain. I tried to look up online and put all this together and i just couldn't. I'm a veteran and have my insurance through the VA. My follow up appointment isn't until Nov 22nd which is more than a month away. From the stuff that I have read online, it seems like if i have carcinoid syndrome, this tumor is well advanced?? It's a scary thought. Is it possible that this tumor is not cancer? The doctor hasn't come straight out and said this is cancer, but could it be anything else? I still have bloodwork to do, a pet scan, and a 2r hour urinalysis, but I am worried and have no where else to turn. Can someone please help...