PNET grade 1: Anyone have adjuvant therapy after surgery?

Hi @margariida. I am personally unaware of any adjuvant therapy after surgery for NETs specifically a Whipple for a PNET. Understanding how difficult the Whipple procedure is, I appreciate your concerns. I am tagging @hopeful33250 on my comment. She has had multiple surgeries for NETs. I want to see, if she has any additional input on adjuvant therapy after NETs surgery.

Hello @margariida and welcome to Mayo Clinic Connect. While I have not had PNET surgery, I have had three surgeries for NETs in the duodenal bulb. As the margins were clear and there was no apparent metastasis, I did not require any adjuvant therapy.

On Mayo Connect, several members have PNETs and have received different types of chemotherapy. Here are some of those discussion groups:
--New Approved Drug for Pnets
https://connect.mayoclinic.org/discussion/new-approved-drug-for-pnets/
--Is Everyone with PNETs on Creon?
https://connect.mayoclinic.org/discussion/is-everyone-with-pnets-on-creon/
How long ago was your Whipple procedure, @margariida. How are you feeling now?

Fiz a cirurgia em dezembro,mas tinha uma margem com menos de um mm.
Por isso acho que faria sentido algo adjuvante em vez do esperar e ver.

@margariida
I can understand your concern. Can you obtain a second opinion from another oncologist?

@hopeful33250 Olá,fiz a cirurgia em dezembro.
O meu oncologista diz que como era grau 1,a única coisa a coisa a fazer é vigilância.
Sinto-me desconfortável com esta abordagem.
Ele diz que para grau 1 e sem doença visível esta é a melhor abordagem.

@margariida I believe that DC therapy is only available in trials in the US. Here is a link about Mayo's:
https://www.mayo.edu/research/clinical-trials/cls-20307011
As you can see, it isn't for NETs.
Here is one resource, Neuroendocrine Tumor Research Foundation, that shows NET trials: https://netrf.org/2026/03/16/netrf-clinical-trial-roundup-march-2026/
Surveillance seems to be the norm post surgery. If you find that adjuvant treatment is available in the US post surgery for NETs, please share that information with us. I have been living on chemo for a stage 4 PNET myself for over 3.5 years. I am very interested in learning what you find. Thank you. By the way, what surgery did you have to remove your PNET?

Have you had a Ga-68 or CU-64 pet scan? This a net specific scan to detect tumors anywhere in the body, assuming the tumors have receptors which the majority do.
If this turns out negative, then close monitoring would seem to make sense.

@tomrennie Olá, eu fiz a cirurgia de whipple.
Tinha 4 gânglios positivo.
Daí a minha procura por algo adjuvante. Já pensei em células dendricas na Alemanha,mas é caro e não sei se funciona a 100%
Em grupos de Facebook há quem partilhe que fez e está a ter bons resultados.
Qual o grau do teu tumor?
Foste operada?
Há quanto tempo?
Obrigada

@lindabees Olá, vou fazer a primeira este mês.
Obrigada

@margariida I have a grade 2. No surgery. What have the Facebook groups done that are having good results with NETs?