PNET Surgery: My recovery journey

Posted by outlawcancer @outlawcancer, Feb 25, 2023

Hello everyone, yesterday on February 24,2023 I underwent a distal pancrectomy and a spleenectomy. I am am posting this comment from my hospital room. I arrived at the hospital at 5:15 Am for registration and I was taken in by the pre-op staff for preparation…as I walked in the area I was in had numerous bays with beds ready for the next person to have surgery.. the anesthesiologist came and spoke to, he then left and came back and began administering meds to call me down, I kid you not, minutes later I woke up in the recovery room. I don’t even remember them wheeling me into the operating room. So here is my post op experience so far. I’m am currently experiencing mid and lower abdominal pain 7/10 severity. The nurses her have been helpful. They’ve administered morphine, Tylenol etc… my surgery was done laparoscopically I have about 6 portholes in my belly and a tube coming out upper midsection for secretion of the pancreatic fluids. They also have these pads on the lower portion of my leg which massages me about every minute or so alternating legs. This was done to prevent blood clotting of any sort…last but not least the old dreaded catheter/foley that’s in my bladder. I have to say my throat is sore from the tube they had in me during surgery.. I can tell you that coughing, moving around is painful for me at least. This is why they administer drugs to keep the pain at bay.. remember they just removed my spleen and half or more of my pancreas.. of course no big appetites or anything like that. I been drink ice water and chewing on ice chips. All these meds tend to dry out mouth. Later around the 10 pm the nurses helped me up and I walked a lap on the hospital floor I am at. So far i have experienced some pain in the belly part of it is probably gas pain as well. Whoever is goin though this procedure just prep yourself mentally and physically it’s not that bad you will be ok. if anyone needs more info please feel free to contact me… I will try to add more details and updates through the day or days to come.

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

michellesimpson10 | @michellesimpson10 | May 22, 2023

In reply to @vmchow "If be so grateful to hear about the drains... I'm going in next month for a..." + (show)

The drains have not been bad or hard to manage.

vmchow | @vmchow | May 22, 2023

If be so grateful to hear about the drains... I'm going in next month for a distal open surgery. My doc is old school.

pavlina60 | @pavlina60 | Apr 26, 2023

In reply to @michellesimpson10 "I’m so glad you are sharing this with us. I was recently diagnosed with stage 1..." + (show)

@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!!💜

michellesimpson10 | @michellesimpson10 | Apr 26, 2023

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

Fabian Trujillo | @fabiant | Apr 25, 2023

In reply to @kim1965 "@fabiant No she had a open incision, about 12" from center of stomach up. So a..." + (show)

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,

kim1965 | @kim1965 | Apr 24, 2023

@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.

Fabian Trujillo | @fabiant | Apr 23, 2023

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?

kim1965 | @kim1965 | Apr 4, 2023

In reply to @billyfeet "Thank you for the report! I am facing a similar situation in the near future. Please..." + (show)

@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.

billyfeet | @billyfeet | Apr 3, 2023

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!

kim1965 | @kim1965 | Mar 26, 2023

In reply to @kim1965 "Thanks for asking! Kim is approaching 4 weeks post surgery this week. The pain associated earlier..." + (show)

@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.