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.

Teresa, Volunteer Mentor | @hopeful33250 | May 26, 2023

In reply to @keisham808 "Thank you so much! 🥰" + (show)

Keep posting as you have questions or concerns, @keisham808. Wishing you the best possible outcome when you have your biopsy in June.

meleelee1 | @meleelee1 | May 27, 2023

I understand how you feel. My net is also on the tail. Mine net is smaller at 6mm. They have been watching mine for a year now. I am tired of waiting. I have a cough, pain, bloating, chills, flushing. . . I have no one that wants to talk about it. I think being bewildered is part of it.

Teresa, Volunteer Mentor | @hopeful33250 | Jul 7, 2023

In reply to @kellietg23 "May 8 (last week), I had a distal pancreatectomy & splenectomy. There was a 1.1 cm..." + (show)

Hello @kellietg23,

As it has been a while since you last posted, I was wondering how you are feeling since your surgery.

By now, you've probably followed up with your surgeon. I hope that went well. Are there any follow up treatments or scans planned?

I look forward to hearing from you again.

Liz | @lizzyeastwood | Jul 7, 2023

I had a very similar diagnosis in 2019, pnet incidentally found on a ct scan that was ordered for colon issues. I had a distal pancreatectomy in February of 2020. Tumor was well defined, 2.5 cm, nonfunctioning ki 67 >2 . Surrounding lymph nodes were clear. Surgeon managed to save my spleen. I have scans every 6 months but no recurrence of tumor. I have had no other treatments than the ct scans.
I know it’s terribly frightening at first but it gets better. Post surgery I’m feeling well. I have gastro issues frequently, but I mostly feel very lucky that the first scan was ordered and the tumor was found early.

MB | @bellom | Aug 29, 2023

<p>PNET, UTERINE FIBROIDS & BRAIN LESIONS</p><p>Created by a 38 year old with a very small PNET that they found in May 2023.</p>

Colleen Young, Connect Director | @colleenyoung | Aug 31, 2023

In reply to @bellom "PNET, UTERINE FIBROIDS & BRAIN LESIONSCreated by a 38 year old with a very small PNET..." + (show)

Hi @bellom, welcome. I moved your post to this existing discussion:
- Just diagnosed with pancreatic NET stage 1 https://connect.mayoclinic.org/discussion/just-diagnosed-with-pancreatic-net-stage-1/

I did this so you can read previous posts and connect easily with other members living with pancreatic NETs like @meleelee1 @lizzyeastwood @elm60 @terry998 @pavlina60 @jodaface02 @bridget1980 @smt and many others.

MB, I look forward to learning more about you. What treatment have you had? How are you doing today?

MB | @bellom | Sep 1, 2023

In reply to @colleenyoung "Hi @bellom, welcome. I moved your post to this existing discussion: - Just diagnosed with pancreatic..." + (show)

As I’m reading the previous posts, I’m learning that I have yet so much to learn about this. I’m doing will with it emotionally. The surgeon wants to do a PET scan before talking course of treatment.

1. I have other issues and wondering if it’s all tied.
2. What kind of treatments are usually presented?
3. Do you have surgeon recommendation in the DC, Maryland and Virginia area?

meleelee1 | @meleelee1 | Sep 1, 2023

I have a 6.6mm net on the tail of my pancreas. They have been watching it for 1.5 yrs. The symptoms are not good, flushing, itching,feeling full and hungry at the same time. Noone wants to talk. They found a thymic cysts on my mediastinum and removed it. Thank God it was benign. I really can't stand the waiting

Teresa, Volunteer Mentor | @hopeful33250 | Sep 1, 2023

In reply to @bellom "As I’m reading the previous posts, I’m learning that I have yet so much to learn..." + (show)

Hello @bellom

When you say, "I’m learning that I have yet so much to learn about this" you are expressing what most of us feel after a NET diagnosis. This diagnosis puts us all in a place of learning and connecting with others. I'm so glad that you found this forum. This is a great place to learn from the experience of others.

Some of your questions can only be answered by your medical team. Regarding finding a good surgeon in your area, I would highly recommend that you be willing to find a NET specialist, whether or not that specialist is local. Be open to considering a virtual appointment if you cannot find a NET specialist conveniently located nearby.

Mayo Clinic has three locations and there are NET specialists at each facility. If you are interested in a consultation, here is information for obtaining an appointment, http://mayocl.in/1mtmR63.

If an appointment at Mayo is not an option for you, here are names of NET specialists world-wide with the U.S. doctors listed by state,
https://www.carcinoid.org/for-patients/treatment/find-a-doctor/
Finding a NET specialist, rather than a general oncologist, is very important. NETs are a rare form of cancer, and they don't behave like typical cancers. Therefore, in order to get the best treatment, you need to have at least one consultation with a specialist. Often that specialist is willing to provide good direction for your team that is closer to home.

I am a 20-year survivor of NETs, having had my first surgery in 2003 and the last surgery in 2016. I know from experience how important a specialist can be.

What are greatest concerns right now? Are you maintaing your weight?

Teresa, Volunteer Mentor | @hopeful33250 | Sep 1, 2023

In reply to @meleelee1 "I have a 6.6mm net on the tail of my pancreas. They have been watching it..." + (show)

Hello @meleelee1

I feel concerned for you when you say, "Noone wants to talk." Are you referring to your medical team? If so, it would be good to find a NET specialist who is willing to talk with you about your options for treatment. If you are able to consult with a Mayo NET specialist either in-person or virtually, here is information on obtaining an appointment. http://mayocl.in/1mtmR63.

If an appointment at Mayo is not an option for you, here are names of NET specialists world-wide with the U.S. doctors listed by state,
https://www.carcinoid.org/for-patients/treatment/find-a-doctor/
It looks like the pancreatic NET was diagnosed over a year ago. Has it changed in size since the original diagnosis?