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New to NET: Not sure what to expect from here
Neuroendocrine Tumors (NETs) | Last Active: Apr 19 5:42pm | Replies (10)Comment receiving replies
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.
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@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!