New PNET

Did they do a biopsy? Is this surgeon parts of a NETs team? You definitely want a NETs specialist with lots of experience treating NETs.

Before surgery, I would definitely get the opinion of a NET specialist, especially since the tumor isn’t causing your symptoms..

First let me say I'm sorry you had to join this group. To answer your question - yes. There are many tests tgst need to be done. Including biopsy to confirm and also to determjne the ki-67 or ratebof proliferation, Also a gallium or copper pet scan which is net specific.
The most important first step is to find a NET specialist. 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 can strongly advocate for yourself. 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!

I wouldn’t have more testing if it’s not recommended by your doctors. It’s possible that the tumor can cause chest pain. Do you know if it’s an Islet cell NET or a carcinoid type tumor? Carcinoids can cause flushing, chest pain and strokes. Get the surgery and try not to worry. I am an 18 year survivor.

What was your original diagnosis? What tests concluded this diagnosis? What treatment helped you become such a long time survivor? 18 years is awesome.

I was diagnosed at Stanford by Dr. Jeffrey Norton and his team. I have a genetic mutation on a tumor suppressor gene and so does my mother. The PET scan they used was the Ga68 Dotatate scan. My mother had the whipple twice and is still alive however my tumor was non functioning unlike hers, which secreted gastrin. So I had a kidney stone and they happened to see the 4 cm tumor intially on a CT. My tumor had spread to the spleen and Dr Norton couldn’t tell at first if it was in the lymph nodes. Apparently it was not, however he said it will come back in 10 years. He was right. Now I live with two tumors in the remaining pancreas but miraculously they are not growing. I hike often with my husband and dogs but mostly I attribute my survival to my optimism and lack of fear. I found that learning all I could and helping others gives me purpose. There is an excellent organization for patients with pancreatic tumors called the Seena Magowitz Foundation. They are having a conference in Milwaukee Aug 15-17th. Patients, caregivers and doctors will be there. My name is Theresa Stern Valentic and my story is on their website. Stay positive and strong! I hope to meet you someday.

Please make sure you have a surgical NETS oncologist/specialist review the CT before you have a whipple.

Hello @mn2025 and welcome to the NETs support group. I see that @californiazebra @vinnie694 @lindabees have already responded to you. A second opinion is always a good idea before any major surgery. Mayo Clinic would be a great place for a second opinion as they have NET specialists at all of the locations. Here is a link with appointment information, http://mayocl.in/1mtmR63.

If an appointment at Mayo is not possible, here is a listing of NET specialists by state and by country, https://www.carcinoid.org/for-patients/treatment/find-a-doctor/. A university medical center nearby would also be a good option.

Here is a link to an article about Tips for Seeking a Second Opinion, https://connect.mayoclinic.org/blog/cancer-education-center/newsfeed-post/tips-for-seeking-a-second-opinion/

Have any other blood tests or other types of scans been done to help confirm the pNet diagnosis?

No. The doctor said ct/mri confirmed. No biopsy because he doesn’t want it to Mets. It just doesn’t make sense.

The only recommendation is the whipple. He said we won’t know what type until biopsy after surgery.