New to NET: Not sure what to expect from here

Welcome. There is a lot of info on NETs right here. Many people have come to this support group to learn more about this cancer and to share their own experiences. You are not alone.

@momo5512: Take a deep breath for you need to first hear that Neuroendocrine Carcinoid Tumors are usually very slow growing. You may have had this situation for quite some time, but now your digestive symptoms have led you to this diagnosis.
My small intestine (duodenum area) primary had metastasized and progressed to my liver by the time I was diagnosed too. You have entered into a community here at Mayo Connect where we will support you, listen & help with every concern, make suggestions when appropriate while always respecting you as an individual.
Please take time to educate yourself by reading the posts on this Neuroendocrine Cancer site. It is important after the testing scans, lab results and biopsy diagnosis to see a NET Medical Oncologist (with Gastro speciality if possible) for a medical consultation, for they will be the best advise on treatment for your specific case. We NET patients are all different in our disease, treatments, and how we react to side effects.
I urge you to persevere in educating yourself before this consultation to be able to ask pertinent questions and be able to absorb the guidance your NET specialist offers.
I joined several NET support organizations and believe more places to reach out for help is beneficial in times of doubt (and we all have upsetting issues arise) - check online.
This initial shock of diagnosis will pass more quickly by educating yourself about this journey and how we may survive (no cure offered, but we aim for best quality of every day!).
I hope this helps you today. We are here 24/7 and no issue is off the table. Hugs to you, Bette dbamos1945

The Seena Magowitz Foundation has a nation wide NET call every month. Go to there website and go to support.

@dbamos1945
That's good advice. The only thing consistent about NET's is that their symptoms and effects vary wildly from person to person. And they're rare. You do need to see a NET specialist, even if you have to travel. Best of luck.

Hello @momo5512 and welcome to the NETs support group on Mayo Clinic Connect. I am glad that you found this forum. I came to Mayo Connect when I was diagnosed with my third NETs and was encouraged by others who had walked the same path. I hope you find the same help and encouragement here as well.

As @dbamos1945 said, it is important to have at least one consultation with a NET specialist, especially when you are first diagnosed. As @eesnerd said, it is important even if you have to travel for that consultation. There are NET specialists at all three Mayo Clinic locations (appointment information is available at http://mayocl.in/1mtmR63). If it is not possible to be seen at a Mayo facility, here is a link from the Neuroendocrine Tumor Research Foundation with NET specialists in the U.S.: https://netrf.org/for-patients/neuroendocrine-tumor-doctor-database/page

From your post, it appears that the NETs have also invaded your hip. Do you have much bone pain? I'd like to invite @tomrennie to this discussion as well.

It's so hard to hear that diagnosis. I'm sure you're feeling scared and confused which is to be expected. My husband was diagnosed with stage 4 pancreatic neuroendocrine cancer 19 years ago and is still here living life. We've learned alot over that time.
The best thing you can do is to educate yourself as much as possible about this disease. You need to know enough in order to be a strong advocate for yourself. Fortunately there is alot of great places to get that information. A great place to start is
https://netrf.org/for-patients/newly-diagnosed/
And
https://www.ncf.net/newlydiagnosed
Next, its very important to see a net specialist if at all possible. Mayo has net specialists at all 3 of their locations. We see the one at Phoenix. Many travel in order to consult with a specialist. This is still a rare disease and requires knowledge and expertise that a general GI oncologist may not have. The sites that I posted have directories of specialists all over the country.
Don't hesitate to come on here with any questions. There's many who have alot of knowledge and experience in this disease and want to help.

@momo5512, just adding on to what @lindabees said, my pnet was found back in October 2004.

Mine was 1cm, and it was ONLY caught because it swelled up & blocked my duct--causing the one round of Pancreatitis that i've had, which threw crazy-high Amylase & Lipase numbers.

We observed it (my Pancreas Specialist was at Abott Northwestern, here in Minneapolis), for 9.5+ years, and i had a distal pancreatectomy in May 2014, that took it out (i was 38).

It was still 1cm, and after pathology sliced diced it all up, it was still benign--so i was incredibly lucky, and my case is VERY odd.

As Lindabees said, there isn't a ton out there--we're pretty "few & far between," cancer-wise.

But PNETs are also the "far better cancer to get," relatively speaking, because they ARE typically so slow-growing.

Her link to the Neuroendocrine Cancer Foundation is a GREAT one!

They used to be called "The Carcinoid Foundation," back when i first found them, in the 00's, they've obviously been helping foljs for decades, and they have a lot of great info & supports!

They also have an online webinar on the 24th (his coming week!) called, "Just Diagnosed With Neuroendocrine Cancer?"

And that webinar should have lots of helpful info!

I'm sorry you joined this club--it's a crappy one to gain enrance to!

But i can also tell you that the folks in that club are GREAT!!!

I found them, back on the old John's Hopkins Pancreatic Cancer discission boards, in the mid 00's, and they ABSOLUTELY helped me to deal with my PNET diagnosis, and the fears around cancer.

As @lindabees knows--there was SO little info around on NET's back then! And that discussion board was my lifeline!

The PNET community is small, but we absolutely try to help one another find good answers, sorry you're here, but we're glad to have you, too!

@villardian
I remember that John Hopkins board! Yes - it was a life saver! There was that one other online forum and that was it.
I'm so glad you're journey has been a relatively easy one. I'm so grateful that you posted here because the newly diagnosed don't often enough get to hear the successes and stories of hope like yoursm Most understandibly move on and are enjoying their life and not visiting these boards. So thank you!

@lindabees thanks to you, too!

And i'm SO glad you guys are still around, too!

I still clearly remember, being 28, being told "you have a tumor in your pancreas," worrying that it was "Big-C" cancer (s opposed to that "Little-c" benign type mine ended up being, because it WAS caught so early!), and being SO scared!

And--yes, the old JH boards were the only place with other patients--and Michael PA's posts about his wife who also had a PNET and was a survivor--was the ONLY guidepost i had back then.

Which was why i KNEW-from his stories about her case & her care, that i needed to learn to read research papers, and keep on top of any research being published--as i'm sure you both know!

I was thrilled to discover Mayo had set this up--because those old boards were SO helpful in helping us "not feel so alone," and in finding & sharing up-to-date info!

And i'll definitely be recomminding this place to some folks i know, too!

@villardian
Michael-PA was an amazing help to us in those early years and on until Sherry sadly passed. He really inspired me to advocate for my husband.