Just diagnosed with pancreatic NET stage 1

Posted by kt348 @kt348, Oct 17, 2022

I’m a 64 year old woman, I’ve have colon issues for decades among other issues. They found my tumor on a CT scan, I don’t think I have any symptoms because of all my other issues in play. Anyway, I’m devastated! It’s on the tail portion of my pancreas, 1c in size, well sectioned, slow growing. I had biopsy done with scope to confirm cancer. My oncologist surgeon had 2 options, wait 6 months and repeat CT so we had a baseline and check for any changes or surgery to remove it, which the tail of pancreas is removed and also remove spleen, tube running (for temp drainage) out of my nose. 4 immunization shots followed by 2 more. So I opted for waiting the 6 months. I’m so confused and scared it’s going to move to another area. If anyone has had this same issue please message me back with your decision. It’s been a month since I found out and I’m a wreck! Thanks

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

kim1965 | @kim1965 | May 14 8:49pm

In reply to @colleenyoung "Hi @sarmi67, I echo @tomrennie's and @kim1965's welcomes. I'm also inviting @hopeful33250 into this discussion. I..." + (show)

Jeannie, take a deep breath, you are among many of us that have gone down this path. You may have done this already, but most of us fight this fight against NET with a multi-disciplinary team including a Net Specialist being the most important part. They will lay out the plan in your case. My wife is 2 years in her fight and is doing well, after being diagnosed stage 4 on pancreas and spread to liver too numerous to count. There are many of us with similar results, please let us know what questions you that we can help you with.🙏

Teresa, Volunteer Mentor | @hopeful33250 | May 14 8:56pm

In reply to @sarmi67 "Hi. My name is Jeannie. I just found out too. They found my tumor during an..." + (show)

@sarmi67 Hello Jeannie and welcome to the NETs support group on Mayo Connect. I can understand what you mean when you say that you are trying to remain calm, but you have so many questions. I was in the same situation in 2003 when my NET was found in the duodenal bulb. I had never heard of this type of cancer and had no symptoms. I was having a routine upper endoscopy for GERD when this was found.

Prior to your meeting with the surgeon, I hope you will make a list of questions. It would be good to inquire about the types of surgeries that are available to remove the NETs. I had two invasive surgeries in 2003 and 2005. When a recurrence was found, I went to a university hospital system where they did a surgery through an endoscopy procedure as an outpatient. My lesions were quite small, but at that time I was not seeing a NET specialist and it was not staged.

Prior to the endoscopy were you having symptoms or digestive tract problems?