Found PNET on tail of pancreas but told it’s nonfunctional

@jenniferrasigade

I'm so glad that you posted again. I hope that your surgery goes well. Tumors in the pancreas and liver are certainly concerning and I can understand your wanting to deal with it.

I would like to invite some other Connect members to this discussion who have also had surgeries such as this including, @kim1965 @ahtaylor @jadedprincess and @pavlina60. Here is another Connect discussion that you might find helpful as you anticipate surgery,

– What's recovery after distal pancreatectomy and splenectomy like? https://connect.mayoclinic.org/discussion/recovery-after-distal-pancreatectomy-and-splenectomy/

What are your thoughts, questions and concerns regarding this surgery?

My wife’s case is similar to yours, as she was diagnosed with NET in April 2022. She had a mass on the tail of pancreas, and too many lesions on liver to count. Our local oncologist referred us to the Cancer Care team at Froedert Hospital in Milwaukee, they immediately started Kim on CAP/TEM chemo by pills, and Lanreotide injections. After 9 months on that regimen, we achieved about 80% reducing size of tumors in both areas. That allowed for surgery in March 2023, that was successful in terms of reducing the remaining tumors still in liver. Currently, PET scans show the NET is only in the liver, and she is being considered for a liver transplant. It is looking like the best option to achieve the best results long term. The best advice on your upcoming surgery, is to make sure you get up and moving around even the same day of surgery. It will help them feel so much better. Please let us know of any questions about your case that we might or the forum can help you work through. We are all here to help you through this. We got this!

I’m sorry your husband is going through this. My husband was diagnosed with nonfunctional pnet 15 years ago. The pain could be caused by the tumor pressing in a nerve. Is he seeing a net specialist? I strongly recommend he do so if he isn’t already as a general onc usually isn’t qualified to handle the intricacies of this disease. Mayo has net specialists in all of their locations. We go to Phoenix. You can find a net specialist by state at the NETRF site
Under patient resources. (they won’t let me post a link but it’s NETRF dot org)
Best of luck to you and your husband

Hello @lindabees and welcome to the NETs support group on Mayo Connect. I appreciate your post and the encouragement you offered, especially about the importance of getting a NET specialist. Here is another link with NET specialist worldwide, https://www.carcinoid.org/for-patients/treatment/find-a-doctor/. If anyone is seeking a consultation with a Mayo NET specialist, here is a link with information about a Mayo appointment, http://mayocl.in/1mtmR63

It sounds as if your husband has done well since his diagnosis of P-Net. If you are comfortable sharing more, I'm wondering what type of treatments he has had. Any surgeries or other chemotherapies? What about diabetic problems?

I look forward to hearing from you again.

I wouldn’t mind at all but it’s lengthy 😁
2008-At Stanford Specialists:Distal pancreatectomy with splenectomy
2009-Began Sandostatin/lanreotide.
2010- Entered captem trial. Stopped after 3 months as no reduction, but stability
2010-Switched to specialist at Cedar Sinai and Dr Wolin:
Bi-lobar Liver radioembolization (hugely successful)
Began lanreotide
2013-Everolimus (stablility achieved)
2016-Cyber knife (lymph node
Discontinued lanreotide and everolimus
2016-2020 No treatments of any kind with continued stability
2021-Progression. Switched care to specialist at Mayo Phoenix due to relocation
Started bi-weekly lanreotide
2022-progression. Went back to monthly lanreotide
Started captem
2023-50% tumor reduction, now stability. Discontinued temodor due to 14 months completed and need to reduce risk of bone marrow disease, etc. Will continue on capcetibine.

Also- he did develop mild diabetes after the pancreas surgery. The use of lanreotide has contributed further to it. However the everolimus also worsened it during his time on that therapy and made it challenging to control. Once he discontinued that, things improved to the point that it is well controlled with metformin

Sorry it’s been a crazy few weeks. We still have no resolution! We can’t seem to find a doctor to help us. We are gonna go and have a prunuvo scan the same scan Maria Menounos had. We're hoping we can get more concrete measurements and maybe they can direct us to a physician who wants to help him. He also is scheduled for a nerve block. I totally believe this tumor is pressing on a nerve and highly skilled physicians are not thinking outside typical signs and symptoms. My husband’s diarrhea has gotten worse but we don’t know who to see to get help. Hopkins and Mayo were no help to us.

@ lully2505 How are you doing since your surgery? Are you at a point in your recovery that you can tell if your old symptoms are gone or is it to early to tell?

I had a distal pancreatectomy and splenectomy in 2017 @ Mayo in Rochester for multiple insulinomas in my pancreas which are NETs by classification. I did fairly well with the recovery. Other than normal post op pain and a spinal headache when they removed the epidural that was in for pain, I recovered well. The hospital stay was 5 days and then I stayed in Rochester for one more night to be sure all was well before I flew home. I did have some leakage from the drain site after the drain was removed but that resolved in 24 hours. I wish you the best with your procedure! Please don’t hesitate to ask specific questions if you have them - happy to answer from my experience. Keep us posted!

So my husband had a nerve block December 26th(steroid injection in his stomach) for his pancreatic pain, he had about a week of relief sadly his pain came back. My mom witnessed him not feeling well after dinner the other day at family gathering. He was flushed in the face and then was pale again and didn’t feel well. My mom went home and was googling his symptoms. I told her this is what I have been talking about but his symptoms are not important to the most educated physicians at Hopkins and Mayo. They are only concerned at seeing hormone levels and size of the tumor. We had a friend tell us that we don’t have healthcare anymore we just have sick care. And sadly as a registered nurse and what I have witnessed with my husband I couldn’t agree more. We are paying out of pocket tomorrow and my husband is having a Prenuvo scan. I am praying they can send us in a direction of where to get help.