Pancreatic neuroendocrine insulinoma

Hi I really need more feedback from this whipple surgery?

I gained a lot of weight... But I still could eat , walk , work 😞 I don't know if I could still do this after this surgery ...

@htam4- I live in Syracuse, NY. We have a very good Cancer center and I had my surgery there in February 2023. The surgeon who did mine , Dr.Dhir is a very good doctor, with NET experience and now he also does robotic Whipple procedures! I was not a candidate since my tumor was large (16×20 cm) and I also had endometrial cancer.
Look him up! Dr.Mashaal Dhir.
Good luck! And do not wait for your tumour to grow! You are lucky they found him so small!

Hi. I am new to the group. I have 3 insulinoma tumors on my pancreas. I am scheduled for surgery next month at John's Hopkins. I had 3 tumors removed last February by enucleation. They are now back and I am having part of my pancreas and spleen removed. I have been reading your stories and I want to say how inspiring everyone is. I am very scared and not sure what to expect after the surgery or how to handle this disease as it sounds like a life long condition.

Hello @sshindle and welcome to the NETs Support Group on Mayo Connect. I'm glad that you found this forum. I appreciate your comment that you've been inspired as you've read the posts of others who are on the same journey as you are.

I would like to invite some other members to this conversation including @pavlina60, @ahtaylor and @tomrennie.
Here are their Connect Spotlights where you can read more about their experiences:
--@tomrennie
https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/the-world-aint-all-sunshine-and-rainbows-meet-tomrennie/
--@pavlina60
https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/a-scientists-approach-to-helping-others-meet-pavlina60/
--@ahtaylor
https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/giving-it-all-youve-got-meet-ahtaylor/
As insulinoma tumors often affect blood sugar numbers, I'm wondering if this has been an issue for you as well?

I look forward to hearing from you again. Will you continue to post your questions and concerns as you anticipate surgery?

Thank you for connect spotlights! Yes, this impacts my blood sugars. The first time I had them, I could hardly keep my levels above 50 some days. This time, it's a little easier to control.

@sshindle

I hope you find the Spotlights encouraging! Did the enucleation procedure help the blood sugar to be better controlled or was there another treatment that has helped with that issue?

I had excellent glucose levels right after the enucleation procedure.

Welcome to the group! To say the least insulinomas can be challenging! Every case is a little different - it is not necessarily a lifelong condition and is actually curable if all the tumors are removed. Much like you, I had multiple insulinomas in my pancreas (11 removed or ablated). I had a modified Whipple for my first surgery which removed 2. When symptoms reappeared a month after surgery and additional tumors could not be found by my endocrinologist in NC, I was referred to an endocrinologist at Mayo Clinic. After a week of testing, 4 more were found pre-operatively, 4 were found with an intraoperative ultrasound and the 9th was found in the distal part of the pancreas that was removed. My second surgery was the same as yours - distal pancreatectomy and splenectomy.
My recovery from the distal pancreatectomy and splenectomy was complication free. I was in the hospital for 5 days. The incision was large - from sternum to belly button and the over to my left side. That was probably the most challenging part of the recovery. I have done well without a spleen. There are vaccines every 5 years post splenectomy. If you have specific procedure questions, I am happy to answer. My wish for you is this surgery removes the remainder of the tumors and it is not a lifelong condition for you 🙂
For me, there a still very small tumors in the pancreas and now in the liver so I continue to battle hypoglycemia but otherwise am doing great and receiving great ongoing care at Mayo Clinic. Please don’t hesitate to reach out with additional questions! Take care!

I fortunately have been able to avoid surgery with capecitabine/temozolomide now just capecitabine for almost two years. I try to keep it simple. Let the doctors speak, ask questions, agree on a plan, and make adjustments as we go.

When is your surgery? Or have you already had your surgery? If so, how did it go? Just thinking about you as I know you said you were scared. Either way hope all is well!
I am going to Mayo soon for a Hepatic Artery Embolization to get to the tumors in the liver and hopefully reduce hypoglycemia symptoms.
Keep us posted and best wishes!