Adenocarcinoma with Neuroendocrine

Posted by sergeanthick2 @sergeanthick2, Jun 15, 2023

I have recently been diagnosed with the Differentiated Adenocarcinoma with Neuroendocrine Differentiations in the Gallbladder, Liver, and parts of right and left Abdomen. I have yet to see a doctor. What are the treatments for such and the final results of my life expectancy? I have numerous other issues involving lungs, extensive calcifications of the arteries and more. They did a Pet/Ct Scan on me, is there other testing that I should recommend to Doctor when i see him, for it is a rare cancer.

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

VA Doctor, not one I am going to see for illness, gave me an ONIMOUS PROGNOSIS.

REPLY

I believe that I have the same or similar diagnosis. Just got the pathology report yesterday. We thought it was a Neuroendocrine Tumor on tail of Pancreas. Biopsy prior to surgery was clearly Neuroendocrine. After surgery….tail of pancreas, spleen and gall bladder removed…..it seems that about 30% of the tumor is adeno carcinoma…….the tumors are mixed together. I have not had a chance to discuss mortality of possibilities going forward. I am too sick just trying to recover from the surgery.

REPLY

Know you are in my prayers!! I will let you know what doctors tell me next week. Godspeed

REPLY
@billyfeet

I believe that I have the same or similar diagnosis. Just got the pathology report yesterday. We thought it was a Neuroendocrine Tumor on tail of Pancreas. Biopsy prior to surgery was clearly Neuroendocrine. After surgery….tail of pancreas, spleen and gall bladder removed…..it seems that about 30% of the tumor is adeno carcinoma…….the tumors are mixed together. I have not had a chance to discuss mortality of possibilities going forward. I am too sick just trying to recover from the surgery.

Jump to this post

I'm very sorry to read this latest post of yours. This is everyone's nightmare.... That the doctors misdiagnosed a PNET and the battle becomes larger and longer. Why did it take so long for them to determine the nature of the tumor and what are they saying about it now? My surgery is next week. I'm terrified again. Your first posts gave me hope, but this news is disheartening. Maybe it's not a good idea for us all to share our stories🙏. I pray that the doctors have something definitive to tell you soon and that the news is better.

REPLY
@vmchow

I'm very sorry to read this latest post of yours. This is everyone's nightmare.... That the doctors misdiagnosed a PNET and the battle becomes larger and longer. Why did it take so long for them to determine the nature of the tumor and what are they saying about it now? My surgery is next week. I'm terrified again. Your first posts gave me hope, but this news is disheartening. Maybe it's not a good idea for us all to share our stories🙏. I pray that the doctors have something definitive to tell you soon and that the news is better.

Jump to this post

Our state of mind has a big effect on our dealing with and healing cancer. I'm praying for you. Everyone's journey is their own. Different doctors, etc. Getting two opinions is always a good thing. I'm writing this, and I look up and to the right of this screen I see Optimism + Nature = Hope

Hang in there, cancer gives us the opportunity to see what needs changed in our lives. Do we need to forgive? Give it to God.

REPLY
@tomrennie

How did you get diagnosed?

Jump to this post

I had severe stomach pain for years, VA doctor gave me acid reflux medicine and been taking for years. It got so severe I had to call an ambulance to transport me to Lake Charles Memorial Hospital and upon doing testing, they determined I had issues with gallbladder. I immediately sent to the operating room where they removed gallbladder using the DaVinci Robotic Arms, and while in there, the cameras showed extreme amount of unusual growth on my liver. Dr Shimer removed the gallbladder entirely and sent it and several samples he cut from liver to pathology where they were not initially identified because of how rare this cancer is, BUT relentless testing, and also sending to Pathology Lab of Lake Charles, both confirmed the identity and had a PET/CT done where it is shown in left/right side abdomen to include liver as well. Will see Oncologist next week to see what happens next

REPLY
@vmchow

I'm very sorry to read this latest post of yours. This is everyone's nightmare.... That the doctors misdiagnosed a PNET and the battle becomes larger and longer. Why did it take so long for them to determine the nature of the tumor and what are they saying about it now? My surgery is next week. I'm terrified again. Your first posts gave me hope, but this news is disheartening. Maybe it's not a good idea for us all to share our stories🙏. I pray that the doctors have something definitive to tell you soon and that the news is better.

Jump to this post

Yeah, thing is the VA oncologist wrote that in my medical records and apparently he did not know that i have online access to my records and read it.. I have a civilian Oncologist I see next week, and he can tell me things will be all right and we can beat this. Praying for you!!!!!

REPLY
@billyfeet

I believe that I have the same or similar diagnosis. Just got the pathology report yesterday. We thought it was a Neuroendocrine Tumor on tail of Pancreas. Biopsy prior to surgery was clearly Neuroendocrine. After surgery….tail of pancreas, spleen and gall bladder removed…..it seems that about 30% of the tumor is adeno carcinoma…….the tumors are mixed together. I have not had a chance to discuss mortality of possibilities going forward. I am too sick just trying to recover from the surgery.

Jump to this post

May your recovery be fast, and your strength be strong. In my Prayers

REPLY
@sergeanthick2

I had severe stomach pain for years, VA doctor gave me acid reflux medicine and been taking for years. It got so severe I had to call an ambulance to transport me to Lake Charles Memorial Hospital and upon doing testing, they determined I had issues with gallbladder. I immediately sent to the operating room where they removed gallbladder using the DaVinci Robotic Arms, and while in there, the cameras showed extreme amount of unusual growth on my liver. Dr Shimer removed the gallbladder entirely and sent it and several samples he cut from liver to pathology where they were not initially identified because of how rare this cancer is, BUT relentless testing, and also sending to Pathology Lab of Lake Charles, both confirmed the identity and had a PET/CT done where it is shown in left/right side abdomen to include liver as well. Will see Oncologist next week to see what happens next

Jump to this post

Wow, you have had quite the journey to diagnosis. Welcome to the team that none of us wanted to be on, but here we are. First of all, relax. NETs are not an immediate death sentence. I know, because I came close. A lack of diagnosis for years had me very ill. 9 months of chemo has me feeling the best that I have in years. Do you know if the oncologist is a NET specialist that works with a cross functional team? I think the terms used are multi-dimensional team? That is another thing. There are all kinds of big words folks use. I grew up around the corner from Rocky Balboa. I don't know too many big words. I keep a medical dictionary nearby and I ask people to dumb it down for me. A lot can't. My main oncologist said great and started drawing me pictures. I knew then that I had the right doctor for me. How else can we help?

REPLY
Please sign in or register to post a reply.