Son, 48 diagnosed with PNET pancreatic cancer 8cm tail & spleen

Sorry for you and your son! Don’t panic most of these pnets are treatable I hope you have or plan on getting a net specialist and a team to treat him. Do you know what grade and the Ki-67 are they functioning tumors? These things all matter. Research the disease it’s good to have an understanding. There are a lot of people here to help!

I will find out Monday regarding staging and if functional or non functioning

Can I ask where you are going?

UVA medical center

We went to Hopkins for my husband’s pancreatic cancer didn’t really matter

Sounds like you are being smart about it good luck!

I am sorry to hear about your situation. I had a similar situation about 6 years ago after going to the ED with a kidney stone. They ended up finding 5 x PNETs as a result of undetected MEN1 mutation. I was also positive in one lymph node. I ended up having a total pancreatectomy the week of Thanksgiving 2019 at Cleveland Clinic. I would recommend reaching out to the Pancreatic Cancer Action Network for support information and some recommended facilities that specialize in PNETs. I continue to do well to this day and use a Tandem pump/Dexcom CGM to manage diabetes and take Creon for digestion. I thought I was not going to make it those years ago but am still here - so don't give up hope! Please let me know if I can help - take care. -Matt

Hello! I have pNET, diagnosed in December 2022 (started losing weight and had a stroke). During PET scan endometrial cancer was also discovered. So, on Feb.1, 2023 I had surgery to remove the PNET (16×20 cm, almost 2 kg), had total hysterectomy, splenectomy, distal pancreatectomy, removed gall bladder, some metastatic tumors removed from my liver, too. Grade 2 well differentiated, stage IV. Have been on Somatouline/Lanreotide since March 2023. CT scans every 3 mo for 18 months, then every 4 mo, now am on 6-mo schedule. There is hope, and we zebras are a tough bunch!🦓💜

First let me say I'm sorry you had to join this group. The good news is that while it is not curable there are more treatment options available than ever before and more under development. Also, the fact that thi is usually slow growing theres typically lots of time to get the needed treatment.
The most important first step is to find a NET specialist. It looks like you may be in Virginia. There are net specialists in Norfolk. I provided a link to a website where you can search by state for specialists
General oncologists typically don't have the required knowledge to know how best to treat this disease and the best sequencing of those treatments. Secondly but equally important - educate yourself! It's so important to learn as much about this disease and the available treatments so that you and your son can strongly advocate for him. We learned first hand how critical this is 17 years ago when my husband was diagnosed and had just had surgery to remove his primary. We sought a 2nd opinion from another highly regarded net specialist to address the liver tumors. This specialist disregarded every available treatment option claiming they wouldn't work and told my husband to get his affairs in order. Knowing this was not true, we sought a 3rd opinion from another specialist (we were fortunate to be in California at the time where there are many). This lifesaver, Dr Wolin, proclaimed "nonsense" , told my husband this can be treated as a chronic disease and proceeded to treat my husband with radioembolization which killed almost all of the liver tumors.

Sorry for the long story but I use it to stress how important education is. We knew from research that there were good options. Had we not, my husband would not be here now still living life.

Here's some great resources for you:

Education
https://netcancerawareness.org/contact-us/
Find a Specialist / Education
https://netrf.org/for-patients/neuroendocrine-tumor-doctor-database/
Third and again equally if not more important, we found peace and strength through our faith. God has lead us exactly where we needed to be every step of this journey. He is here for you, too.

Best of luck to you!

Hello @llr9f and welcome to the NETs support group on Mayo Connect. I see that many other members have already responded to your post. I see that your husband passed away from pancreatic cancer and his experience is probably creating anxiety for your son's health issue. As it has been mentioned by previous posts, pNETs are not the same as other pancreatic cancers. We have other members who have had this diagnosis for many years. Here is a Spotlight from a Connect member who has this diagnosis, @tomrennie,
https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/the-world-aint-all-sunshine-and-rainbows-meet-tomrennie/
Another Spotlight from @pavlina60, https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/a-scientists-approach-to-helping-others-meet-pavlina60/

I look forward to hearing from you. Will you post an update after the appointment on Monday?