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.

@kim1965

@outlawcancer
Day 2 update- Kim is doing way better today than last night. They have her walking 4x a day and sitting in the chair 3x a day. Pain is being held at 3-4, or lower, so much better today. I know it’s early yet, but going well so far. Drain tubes are slowing down.

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Hello @kim1965,

I so appreciate the update! I'm glad that Day 2 is a better day for Kim and that she is walking. I recall walking the halls pulling my IV stand with me. Does she have an NG tube as well?

Keep posting as you can and let Kim know that each day will be easier>

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@outlawcancer

Hello everyone I am now at home resting. My pain levels have dropped significantly since yesterday. I haven’t been needing to take any heavy duty meds. Please excuse the nasty talk about this but I’d like to get feed back from those who been through this? Today I had my first bowel movement , of course it was diarrhea and it was like a dark green, and fowl smelling. Sorry that gross. But has anyone else experienced this?

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Hi @outlawcancer and congratulations on being home, now. Yes, loose stools are common after extensive digestive tract surgery and each person's experience is different. If you have any concerns, though, please contact your doctor's office by phone or through the patient portal.

I look forward to hearing from you as you continue your recovery. Will you keep posting with any concerns or questions?

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@hopeful33250

Hello @kim1965,

I so appreciate the update! I'm glad that Day 2 is a better day for Kim and that she is walking. I recall walking the halls pulling my IV stand with me. Does she have an NG tube as well?

Keep posting as you can and let Kim know that each day will be easier>

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NG tube wax removed if that the one from her nose. Still has the drain container in, hoping to remove by the time she leaves hospital.

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@kim1965

NG tube wax removed if that the one from her nose. Still has the drain container in, hoping to remove by the time she leaves hospital.

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@kim1965
Yes, the NG tube is in the one in the nose. I'm glad to hear that she continues to make progress. It does take a while for everything to heal so be patient with the process.

When I had my invasive surgeries, I had an epidural for pain. How is Kim's pain being controlled?

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@kim1965

Surgery update: Kim had surgery today to remove remove remaining mass on pancreas, remove gall bladder, remove spleen, remove as many liver tumors as possible. The surgeon states the left lobe of liver Kim’s good, but right lobe has micro tumors remaining that further treatment in future may address or the right lobe may be removed. Awaiting lab results on tumors removed to develop next step in our plan. Surgery was about 4.5 hours and she didn’t wake up till 5 hrs after. Onward to day 2 today.

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Wonderful news! Fingers crossed for a good path report and that all mets are removed.
Let the recovery begin!

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Hello,

I have a lesion on the tail of my pancreas. They thought it was a NET and they did an EUS and biopsy. When they did the pathology, they said it highly expressed the CA 19-9 in staining, and my CA 19-9 is elevated. But the dr said they didn’t “know what to make of it”. Basically said it stains for CA 19-9 like an adenocarcinoma would but that the cells look atypical. So they’re sending me to surgical oncology but I was just wondering if anyone else had experienced this. I thought after the biopsy we’d have a clear answer whether it was NET or adenocarcinoma. But really that wasn’t the case.

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Hello everyone, 7 days ago today I was at the hospital in surgery to have my spleen and partial distal pancreatectomy procedure. I been home about 2.5 days now and recovering. It’s been nice to just lay around veg and sleep watch TV all day and not worry about anything else other than myself. Sounds selfish but sometimes we have to take care of ourselves. Pain levels are low I’m managing those with 2x325mg over the counter Tylenol. I have other meds if needed and thankfully I have not needed them. I am on self injectable blood thinners for 22 more days as this is normal to keep blood clotting from occurring. Please if you have any thoughts or concerns feel free to reach out.

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@hopeful33250

@kim1965
Yes, the NG tube is in the one in the nose. I'm glad to hear that she continues to make progress. It does take a while for everything to heal so be patient with the process.

When I had my invasive surgeries, I had an epidural for pain. How is Kim's pain being controlled?

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Day 3 update- a few issues today. Started with low BP at 90/55, although she tracks low but not that low. Had blood infusion as hemoglobin was low, thinking there was internal bleeding. BP improved but breathing was troubled. Did two CT’s of lungs and found two blood clots. Heflin started to address clots. Breathing improved rest of day, continued walks on floor x 4 and finished resting comfortable finally after tough day.

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@kim1965

Day 3 update- a few issues today. Started with low BP at 90/55, although she tracks low but not that low. Had blood infusion as hemoglobin was low, thinking there was internal bleeding. BP improved but breathing was troubled. Did two CT’s of lungs and found two blood clots. Heflin started to address clots. Breathing improved rest of day, continued walks on floor x 4 and finished resting comfortable finally after tough day.

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Hi @kim1965

I'm sorry to hear that today was a rough day for Kim. It sounds as if the hospital was diligent in finding the problem and correcting it with the heparin. Meds to thin the blood are important when you are hospitalized and will be in bed for a prolonged period of time.

Is she still on an IV for nutrition? Has there been any discussion on when she might start with liquids or a soft diet?

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@outlawcancer

Hello everyone, 7 days ago today I was at the hospital in surgery to have my spleen and partial distal pancreatectomy procedure. I been home about 2.5 days now and recovering. It’s been nice to just lay around veg and sleep watch TV all day and not worry about anything else other than myself. Sounds selfish but sometimes we have to take care of ourselves. Pain levels are low I’m managing those with 2x325mg over the counter Tylenol. I have other meds if needed and thankfully I have not needed them. I am on self injectable blood thinners for 22 more days as this is normal to keep blood clotting from occurring. Please if you have any thoughts or concerns feel free to reach out.

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It is not at all selfish to be taking care of yourself, @outlawcancer. I'm glad that you are on self-injectable blood thinners. How long will you be taking those injections?

What type of diet are you following now?

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