I’m living with Pancreatic Neuroendocrine Cancer

Posted by lovelea @lovelea, Mar 6 8:20pm

Hi I’m lovelea. And I just joined Mayo support group. It will be nice to ask others what I can expect and learn from.
My cancer was found by accident as I was very sick with appendix and they discovered the neuroendocrine pancreatic tumour

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

lovelea | @lovelea | Mar 6 8:44pm

I’m hoping to find a group where I can find out more information and be able to share issues that arise

dbamos1945 | @dbamos1945 | Mar 7 3:39am

In reply to @lovelea "I’m hoping to find a group where I can find out more information and be able..." + (show)

@lovelea: I am sorry that you are in this situation, but I want to assure you this and other organizations you can access online under Carcinoid.org, LACNETS.org, etc have been a life-saver for me on this Neuroendocrine journey!
We share our experiences with medications, treatments, side-effects, and other issues that arise. We find acceptance of our disease and encourage positivity in our outlook daily.
You can reach me by “reply” and put @dbamos1945 on first line of text if you wish.
Best to you… Bette

matt2024 | @matt2024 | Mar 7 6:42am

In reply to @lovelea "I’m hoping to find a group where I can find out more information and be able..." + (show)

Hi @lovelea, it is sad to hear of your situation as I completely understand. I was diagnosed with 5 pancreatic neuroendocrine tumors incidentally as well. I ended up getting a total pancreatectomy with all of the trimmings (spleen, gallbladder, duodenum, lymph nodes, etc.) about 6 years ago. I am still tumor free at this point and have routine imaging and tests to monitor. My tumors were a result of a MEN1 mutation and I also have had 3 1/2 parathyroids removed over the years.
I manage the resulting diabetes with an insulin pump/CGM and use Creon to aid in digestion.
My takeaway is that I was in shock at first those years ago, and figured I was done. But, I spent a lot of time reading and visiting different medical providers to find the best path for me. I am doing well now and manage to lead a normal life (for the most part.)

We are all here for you if you have any questions or need to talk. Take care and God Bless - Matt

drkarasheed | @drkarasheed | May 2 8:59am

I wish to join a group with NET Pancreas with multiple Secondaries in Liver, and on Octreotide for 5 years. Incidentally found out by the Radiologist while scanning for likely U Bladder stones. The tumor is 'Non-Secretory' as per the Biopsy reports.
First and 10th DOTA PET scans are almost the same

Colleen Young, Connect Director | @colleenyoung | May 14 8:48pm

In reply to @drkarasheed "I wish to join a group with NET Pancreas with multiple Secondaries in Liver, and on..." + (show)

@drkarasheed, you may wish to join these relevant discussions:
- Pancreatic Cancer: Anyone have liver metastasis after Whipple?https://connect.mayoclinic.org/discussion/pancreatic-cancer-11/

- pNET with liver metastases: What is necrosis? https://connect.mayoclinic.org/discussion/p-net-liver-metastises/

- Diagnosed with Stage 4 pancreatic neuroendocrine metastasized to liver https://connect.mayoclinic.org/discussion/diagnosed-with-stage-4-pnet-metastasized-to-liver/

See all search results
Pancreatic NETs with liver metastasis https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/?search=liver%20metastasis%20pancreas&index=discussions

Octreotide https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/?search=Octreotide%20&index=discussions