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Treatment options for a Mixed Adenoneuroendocrine Carcinoma (MiNEN)

Posted by barbaravela @barbaravela, Nov 2 12:10pm

Hello everyone,

My cousin (37 years old) has been diagnosed with a Mixed Adenoneuroendocrine Carcinoma (MiNEN) located in the tail of the pancreas, measuring about 13x15 cm. The tumor is attached to the spleen, the ribs, and possibly some nearby areas. The pathology report mentions a neuroendocrine component, and there might be a few small local metastases near the tumor, but no distant spread so far.

We are trying to understand what treatment could offer the best outcome — surgery first or chemotherapy first?

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

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barbaravela | @barbaravela | Nov 2 10:39am

Hello everyone,My cousin has been diagnosed with a mixed adeno-neuroendocrine carcinoma (MiNEN).We’re trying to understand if surgery is recommended as the first treatment option in this situation, or if chemotherapy should be done first.I would really appreciate any insights or experiences from doctors or patients who have dealt with this rare type of cancer.Thank you so much for your help. 🙏

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Turkey, Volunteer Mentor | @tomrennie | Nov 2 1:32pm
In reply to @barbaravela "Hello everyone,My cousin has been diagnosed with a mixed adeno-neuroendocrine carcinoma (MiNEN).We’re trying to understand if..." + (show)
Profile picture for barbaravela @barbaravela

Hello everyone,My cousin has been diagnosed with a mixed adeno-neuroendocrine carcinoma (MiNEN).We’re trying to understand if surgery is recommended as the first treatment option in this situation, or if chemotherapy should be done first.I would really appreciate any insights or experiences from doctors or patients who have dealt with this rare type of cancer.Thank you so much for your help. 🙏

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Hi @barbaravela and welcome to Mayo Connect. Mayo Connect is a forum for patients and caregivers. You most likely won't get responses from doctors. I am so sorry to hear about you cousin. The treatment for his cancer depends on a number of factors. For instance, where is the primary cancer? How big is it? Has it spread anywhere else? How far away from the primary cancer has it spread? There are more, but this is a good start. Do you know any of this? It will hopefully help others respond that might have a similar set of circumstances. Thanks.

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pavlina60 | @pavlina60 | Nov 3 1:01pm

Hello! I have been diagnosed with pNET similarly (15×4.9×16cm) at the same time as endometrial cancer (via DG-PETscan). After Ga-dotatate PET I undervent simultaneous surgery for both with the removal of the tail of the pancreas, spleen, gall bladder, same stomach resection, as well as liver debulking and total hysterectomy on Feb.1 2022. In March was my first Somatouline/Lanreotide injection. I have been on it since, with CT scans to follow the treatment every 3 months the first year, every 4 mo the next, and am on twice a year now. I have multiple metastases in the liver.
Take ir easy! This is not a death sentence! Requires some diet adjustments and regular treatment! Hugs and keep the faith! 🦓💜

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