PNET on tail of pancreas with numerous bilobar hepatic metastases

I say yes continue get a 2nd and 3rd opinion, don’t stop advocating for yourself. My husband is having the same issues in finding help but I refuse give up. We’re headed for a 3rd opinion at Penn Medicine he has a small Neuroendocrine tumor in his tail of pancreas has severe pain in his ULQ especially after eating, we’re convinced it is from the tumor even though we were told it’s not from the tumor. I am appalled from these so called experts, when it’s all quite clear to me when it’s the only thing we have found and they try to make my husband think he is making it all up in his head. We had a Prenuvo scan that we paid for out of pocket done this past Wednesday to rule out anything else and hoping to get a more accurate size of the tumor. Keep pushing and advocate for yourself.

I am also a PNET, you more in the tail and head. I had two surgeries. The tumor was under 1 cm and the surgeon missed it but did a partial pancreactomy . So I waited 8 months and it showed up in the Pet scan. They had already biopsied to show a well differentiated ki 67 is < 3%. So I waited for better insurance and had my surgery at Mayo Clinic Jacksonville with Dr Stauffer and I see Dr Jason Starr as my NET Specialist. I ended up with two primary tumors and they did a modified Whipple. Instead of taking the head of the pancreas, they removed the tail where one of the tumors was located. I am very surprised they have not opted for surgery for you. I agree a second, third opinion is needed and I did that as well. When they do surgery on you request that they remove the gallbladder as it can be affected by the monthly injections. Wishing you all the best!

Hello @donnarushing55 and welcome to Mayo Connect. Yes, NETs are rare and as @tinerobison posted, getting another opinion from another NET specialist is a good idea to help give you peace of mind that your current, "watch and wait" approach, is the best for you right now.

As you probably know, Mayo Clinic has NET specialists at all three of their locations. If you would like to set up an appointment (either virtual or in-person), here is a link to appointment information, http://mayocl.in/1mtmR63. If for any reason, an appointment with Mayo is not possible for you, here is a link of other NET specialists throughout the United States, https://www.carcinoid.org/for-patients/treatment/find-a-doctor/.

Here are some other discussions on Connect on the topic of Pnet that you might find helpful,
--2-Stage Surgery for Metastatic Pnet
https://connect.mayoclinic.org/discussion/2-stage-surgery-for-metastatic-pnet/
--Found Pnet on tail of pancreas, but say it's nonfunctional
https://connect.mayoclinic.org/discussion/hopkins-found-pnet-on-tail-of-pancreas-but-say-its-nonfunctional/

There are several other discussion about Pnet on Connect. Just go to the top of the screen and click on the words in blue that say, "Neuroendocrine Tumors NETs." This will take you to all of the NET discussion groups. Then below the heading you will see, 'Search Discussions." If you put, "Pnets" in that search box it will take you to all of the posts where Pnets are mentioned.

As you mentioned having "perfect blood tests" I'm guessing that the Pnet has not affected your blood sugar. Is this correct?

Do get a second opinion but be sure they are a NET specialist. My husband was written off by a top Boston hospital a year and a half ago so we went to a new facility and have had good results. Please keep in mind NET’s are different for every individual. I see people here who have been treated for many years. There are new therapies coming out constantly. My husband has had embolization, two types of chemo, monthly octreotide shots, and is currently undergoing PRRT (radiation) therapy. His first doctor said he would be gone in 6 months. That was 20 months ago. Keep fighting!!

@donnarushing55, I'd like to add my welcome. I can imagine you're reeling. How are you doing today?

I've scheduled a second opinion visit to MD Anderson in Houston for next month. Not sure what to expect but I'm interested in what a second set of eyes would recommend. Best of luck to you and your husband and prayers you receive much needed answers as well.

I was told surgery was not an option and I did not press for further explanation, just accepted it was due to the number of small tumors on my liver. I understand every case is different and I will be interested if a second opinion confirms. Thank you for the information. I am currently in a Clinical Trial that Dr. Starr is in charge of at Mayo Jacksonville although I have never seen him.

Thank you for the information. Yes, my blood results have been consistently normal, no blood sugar issues or flags of any kind. I believe that is one of the primary reasons my major symptom of pain was largely ignored.

Your husband's story is encouraging and I will be getting a second option. Thank you and best wishes!

Thank you! I'm actually doing good with the octreotide( bi-weekly shots) and hopefully scheduled scans in March will show some progress in reducing both the tumor in the pancreas and the multiple small ones on the liver. At the least, no progression! I will be having a second opinion before then - so I will be better informed as to other options available.