PNET Surgery: My recovery journey

Hi @kim1965, a few more days have passed since posting about the pain with eating. How is Kim doing? Is eating getting better?

Thanks for asking! Kim is approaching 4 weeks post surgery this week. The pain associated earlier in the two weeks after surgery eating is similar, but she is more knowledgeable now about how much to eat, never eating to that “full” feeling. Grazing throughout the day is still good advice. Kim is diabetic, so all this surgery removing tail of pancreas, is very challenging finding the new normal in controlling her counts. She hopes to return to her job part time in mid April. We meet with our Cancer care team this week to determine next steps, in trying to keep the NET as a mtn. item going forward.

@outlawcancer
Hoping your journey after surgery is going ok? How are you doing? Kim is ok, but getting her diabetes to a new normal has become difficult with big highs and lows trying to find a middle ground.

Thank you for the report! I am facing a similar situation in the near future. Please keep updating your recovery. Wishing you all the best!

@billyfeet
Kim continues to have too many high/lows on her sugar count. From lows to 45 up to 330. Endocrinology doctors is making changes daily to find what works. Big picture wise the plan is to continue Lanreotide and review in 90 days with MRI and CT to hopefully stay at grade one.

Hello, I was recently diagnosed with a PNET in my pancreas. I believe its stage 1 and its 1.7 cm. I will be meeting with a Dr. Chee Chee
Stucky (surgeon) to discuss my options. What type of surgery was performed on you? Was it a whipple surgery?

@fabiant
No she had a open incision, about 12" from center of stomach up. So a couple of suggestions right away, be sure you are working with or get a second opinion from NET Specialist. NET as you find if your researching it like crazy like we did when first diagnosed, is a very rare cancer. Many oncologist's haven't had much experience with it. Ours referred us to Froedtert Hospital in Milwaukee, WI to their Cancer Care Center Team. It is very important to get the best advice to have a multi-disciplinary cancer care team to battle NET. From what you mentioned, you have caught it very early. We all here are not doctor's of course, but we all share our stories to help one another at least to be better prepared to have questions prepared for their Cancer Care Team. Each version of NET's effects everyone differently. Your Cancer Care Team will determine which is the best course of action for your case. Our case to give you a brief rundown, my wife was diagnosed with NET in April 2022. She had a mass on pancreas, and too numerous of lesions to count on Liver. We immediately ed to started Chemo (CAP/TEM) pills version and monthly injections of Lanreotide, and after 9 months, reduced the tumors in both areas by 80%, allowing for surgery in 3/1/23. We are here to help and offer support however it will help you in moving forward and fighting NET. Let us know how we can help.

Kim

Thank you. I'm being seen at the Mayo Clinic in Phoenix/Scotsdale. My oncologist specializes in treating PNETs. My surgeon, whom I'm meeting with on May 2nd for the first time, specializes in treating PNETS. I'm waiting to see what her recommendation is for this tumor. My Oncologist wants to do the observe and wait but it feels like a ticking time bomb. I'm not sure how slow this cancer grows. I'm just starting to learn all I can about this disease. The PNET is localized and well differentiated. They say it hasn't spread. I trying to understand the best options for me at this time. They say enucleation surgery is potentially an option. I'm trying to find information on this surgery. If you know of anybody who's had enucleation surgery, it would be great to communicate with them. Thanks,

I’m so glad you are sharing this with us. I was recently diagnosed with stage 1 NET in the tail of my pancreas about 2cm in size. I have an Oncologist who specializes in NETs. My other Gastroenterologist thought the tumor was a splenule after a surgical needle aspiration biopsy showed only blood and tissue without any malignant cells. However they then had me do a SPECT CT and then a PET scan. Which finally confirmed the NET.
I am set to have the tail end f my pancreas removed(15-25%) and also my spleen I. May 8 in Austin Texas. I’m concerned but glad to have options for treatment. I am also diabetic and my sugars are usually in the high 200-400 even on insulin and metformin
Your experience has a helping me prepare for my surgery.
Did your Dr have you drink a pre surgery prep called Impact AR twice a day starting 5 days prior to surgery ? Also did they tell you to drink a carbonated drink on the way to the hospital? This was what the PA advised me to do.
You’re in my prayers

@michellesimpson10
Not familiar with the ImpactAR, but it seems a good way to prepare you for speedy recovery.
I had to take large doses of 2 antibiotics twice daily 2 days before surgery.
Have not heard of the carbonated drink..
And I was considered a diabetic( but without medication). Before surgery my A1C was 7.1. On april 20 (2.5 months after) it was 5.4! Looked like even the small part that is left of my pancreas now is working and producing enough insulin! Hope you will have a sucsessful surgery with the best outcome!!💜