Just diagnosed with pancreatic NET stage 1

Oh and appetite is wonderful... Can't stop eating like my taste buds we're going crazy

Hi,
I’m new to all this and I’m pretty scared. Pancreatic Neuroendocrine tumor was found by accident last month. It’s very small, about 1.5 cm. Getting PET Gallium on 1/26. Had an appointment with surgeon last week and was told about the whipple procedure which scared me more than cancer. I’m only 42 and have a 3 year old little boy. I’m scared. Any advice, I’m very new to this process

Hang in there. A Whipple procedure can be a challenging and scary procedure. I had mine in 2015. I had a great support system that helped me through it. I was also 42 and my kids were 12 and 14. I am happy to help in anyway I can. Please don’t hesitate to reach out with questions. I wish you the very best!

My husband was told by a local general oncologist that he needed the Whipple (just said it off the cuff, like it was nothing) although the tumor was in the tail of his pancreas.

It’s a cautionary tale and I suspect that most Drs do better. We fired him and contacted a university with a Neuroendocrine department , where only the tail of the pancreas and spleen resected on Tuesday. He is doing well.

This illness requires patience and persistence and often allows time for both.
Take care!

I understand how you are feeling, my two youngest were 6 when I was diagnosed with a NET on the head of my pancreas. Mine was also small only 1cm, I consulted with 3 surgeons initially, all three recommended to watch it as NETs are slow growing and they all said where mine was growing made the Whipple surgery more difficult. I was diagnosed in 2012 had modified Whipple surgery and liver resection and liver ablation in 2019. My primary NET never really grew but did spread to my liver. My primary NET was functioning for over 10 years before my surgery, so my quality of life greatly improved after having Whipple surgery. I did have a slow recovery after surgery but was easily back at work at 6 months. For me I felt fully healed after a full year. I have all of my stomach and pylorus but have chosen to modify my eating to be healthier after surgery. I eat a lower fat diet (I try to keep it to healthy fats), I avoid processed foods, added sugar, alcohol as I want to be as good to my remaining pancreas as possible. I wish I had Whipple surgery earlier as I would have only needed Whipple surgery and not liver surgery as well. Be sure to ask your doctors as many questions as you need to feel comfortable with your decision. Don’t hesitate to seek other opinions from doctors that specialize in NETs and Whipple surgery.

Hi, Bridget. I'm fairly new to this support group too. Just wanted to let you know how sorry I am you are going through this. I think fear is a pretty normal human response, and I was too. You're in my thoughts and prayers. My tumors are in my liver and one if them is golf ball size. I'm having a PET scan on 2/6. I'll be pulling for you on the 26th.

So good to hear about your husbands surgery, @wifey2021. Getting a second opinion at a center which specializes in NETs is usually a good option.

When do you expect your husband to be discharged from the hospital?

He was discharged 3 days ago. He has a very good prognosis as I feel they caught it early, incidentally.

Hello Bridget1980 I am 44 Y/O and I was diagnosed with PNET on 11/27/22. I also have 3 boys, 2 teenage and one younger. I was devastated when I found out about having a PNET. Mine is on the tail of the pancreas and on one of my lymp nodes. One of the Dr’s I saw at city of hope said it appears to be a grade 1 or 2 and probthas been there for about 2-3 years. 4 surgeons have recommended the same procedure, removal of about 50-60% of the pancreas and the spleen. One dr I spoke to said “ehh don’t worry it’s chip shot surgery you’ll be fine.” He also said don’t worry you won’t miss your spleen either. Nevertheless, being scared is normal if you saw my stature and tattoos on my body you would think I’m a big tough guy, but deep inside I’m not. Surround yourself with positive people and keep busy. If you would like more support please do send me a message through this thread and post: I’ve read and heard the there is a 93% survival rate around PNET patients. Let’s keep our heads up and be productive and pray.

Welcome @bridget1980, I hope you saw the helpful and supportive replies you got from members like @ahtaylor @smt @lindaldotson @outlawcancer - members who have been where you are now. To help you connect with even more members, I moved your message and the replies to this existing discussion:
- Just diagnosed with pancreatic NET stage 1 https://connect.mayoclinic.org/discussion/just-diagnosed-with-pancreatic-net-stage-1/

You can read through previous posts and get more insight. Bridget, like others have said, it's completely natural to be scared. While you may not be feeling very lucky right now, I'm very thankful that the tumor was found by accident while it is small.

Here are more discussions from the Pancreatic Cancer Support Group to learn more about how you can prepare for the Whipple surgery and recovery:
- New diagnosis of early and small pancreatic cancer, Whipple at Mayo? https://connect.mayoclinic.org/discussion/new-diagnosis-of-early-and-small-pancreatic-cancer-whipple-at-mayo/
- Whipple procedure: What is the recovery like? https://connect.mayoclinic.org/discussion/pancreatic-cancer-whipple-procedure/

Do you have a date for your surgery yet?