Investigations for pancreatic lesions, NETs? Confused and concerned

Posted by cottagepeople @cottagepeople, Nov 6, 2022

Does anyone understand my CT w/contrast results?
Details
Study Result
Impression
IMPRESSION:

-Two 1 cm pancreatic lesions are unchanged. The lesion in the neck appears
to definitively arise from the pancreas, the one at the level the body
could be a small/normal-sized abutting lymph node.

-Given the prior restricted diffusion on MRI, these lymph nodes also demonstrate
relative restricted diffusion) suspicious for
solid neoplasm, potential neuroendocrine tumor, atypical morphology for
adenocarcinoma we are (please note, potential normal lymph nodes also demonstrate
relative restricted diffusion). Alternatively, a small complex cyst or
ductal sidebranch IPMN with chronic internal clot is possible at the level
of the neck.

-Would suggest continued short-term imaging surveillance (e.g.,
contrast-enhanced CT or MR in 3 months

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

Teresa, Volunteer Mentor | @hopeful33250 | Nov 7, 2022

Hello @cottagepeople and welcome to Mayo Connect. As you might know, on Connect we all patients like yourself (not medical professionals) so we cannot offer insight into the meaning of reports or offer medical advice.

I also have pancreatic cysts and share your concerns. I follow up with an MRI and after several years, they remain stable.

I would suggest that you talk with your doctor either in person or through the patient portal and ask about the follow up that is needed to be sure that changes are not missed.

Are you seeing a GI specialist for follow up?

cottagepeople | @cottagepeople | Nov 8, 2022

Yes they called and I am going in today for a EUS biopsy
Thank you and bless you

Teresa, Volunteer Mentor | @hopeful33250 | Nov 8, 2022

In reply to @cottagepeople "Yes they called and I am going in today for a EUS biopsy Thank you and..." + (show)

Hi @cottagepeople

I'm glad to hear that you have been contacted. A EUS was my first step after the pancreatic cysts were discovered. I wish you well.

Will you post again, as you are comfortable doing so, with an update on how you are doing?

Colleen Young, Connect Director | @colleenyoung | Nov 18, 2022

In reply to @cottagepeople "Yes they called and I am going in today for a EUS biopsy Thank you and..." + (show)

@cottagepeople, just checking in. How did the biopsy go? How are you doing?

cottagepeople | @cottagepeople | Nov 19, 2022

Thank you for asking. I did have the EUS without the biopsy. The Dr said he didn't do the biopsy because what he saw was scar tissue and the pan duct was slightly enlarged. He said it is good news but ordered blood work and another MRI in 3 months. I'm happy and confused. Why the lab and MRI so soon if nothing? Do you know?

Teresa, Volunteer Mentor | @hopeful33250 | Nov 19, 2022

In reply to @cottagepeople "Thank you for asking. I did have the EUS without the biopsy. The Dr said he..." + (show)

@cottagepeople

From my experience, your doctor is doing the typical follow up. At this point, it won't serve you well to be overly confused and/or worried. I'm always thankful for the follow ups and appreciate the doctor being thorough.

I had an EUS without biopsy when my pancreatic cysts were first discovered. At first, I had a yearly MRI. After a couple of years (of no changes) I began having the MRIs every other year. Now, it is every two years and I have blood work done in the in-between years when an MRI is not done.

After several follow-ups (and if no change in the size or number of pancreatic cysts are found) the follow-ups will probably be less frequent.

How are you feeling?

Colleen Young, Connect Director | @colleenyoung | Nov 19, 2022

In reply to @cottagepeople "Thank you for asking. I did have the EUS without the biopsy. The Dr said he..." + (show)

I agree with @hopeful33250. It sounds like your doctor is being thorough and wants to keep an eye on your pancreas just in case. I hope that can give you some comfort rather than worry.

I'm also tagging fellow pancreatic NETs members, like @kt348 @sturns @elm60, who can share their investigative procedures and how monitoring was done for them.

EM | @elm60 | Nov 20, 2022

In reply to @colleenyoung "I agree with @hopeful33250. It sounds like your doctor is being thorough and wants to keep..." + (show)

Hello @cottagepeople!
My pancreatic NET was found during an EUS for a liver biopsy! I was a asymptomatic and experienced no pain, but I had GI issues for years prior from Irritable Bowel Syndrome, IBS.
In 2019, when I had the Whipple surgery to remove the tumor at Mayo, they actually removed 2 NET tumors. In my 2021 MRI, they now show a pancreatic cyst 7mm on the pancreatic head. My doctor is also not alarmed by the find, due to the size, and we will watch and wait. My next yearly MRI is in December. I am so glad that you are also undergoing the surveillance by your doctors. There is no need to worry right now. Try and focus on the positives and thankful that they will watch your situation with the upmost care. It truly sounds like you are in good hands. 🙏✝️💜

cottagepeople | @cottagepeople | Nov 20, 2022

In reply to @elm60 "Hello @cottagepeople! My pancreatic NET was found during an EUS for a liver biopsy! I was..." + (show)

I wonder why the follow up at all with me if the so called scars on my pancreas steming from a severe acute gallbladder+pancreatitis attack in dec 2017. Do scars turn into tumors? I have had diarrhea since May of this year and probiotics help with that. Certainly better than constipation. But the diarrhea is very new to my system. Nothing seems to cure it. Your gi problems do you think related to your liver or pancreas?. I just want to cancel the next MRI in 3 months because of the worry for nothing. Of course I'm happy for the no cancer EUS result. Very happy
I just want to stay that way until and if I turn yellow. You know what I mean?

EM | @elm60 | Nov 20, 2022

I am certain scar tissue doesn’t turn into tumors. I think they are just being cautious.
Do you have any flushing of the face or neck area at random? Your physician May order some extra blood tests if so, one being a 5Hiaa. This will tell if you an any excessive hormones. Flushing and diarrhea are common among NET patients with what they call functional tumors. I don’t have those issues as I am non-functional for now. I suffer from constipation and have so even before my journey began. Post surgery my pancreas showed chronic pancreatitis. I can only say I had bad stomach aches prior to surgery but was part of IBS-C as well.