1. < Neuroendocrine Tumors (NETs)

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.

Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Mar 6, 2023
In reply to @kim1965 "@outlawcancer Day 6 update - we got a nice surprise, the surgeon ok’d Kim to go..." + (show)
@kim1965

@outlawcancer
Day 6 update - we got a nice surprise, the surgeon ok’d Kim to go home today. Slowly teaching body, how to eat again slowly. Pain is manageable with Tylenol. As there is still some tumors on the right lob, although too small to remove, she will resume Cap/Temp chemo to continue reducing what’s left. Time to heal then the fight continues hopefully more on just a maintenance level.

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That sounds so encouraging, @kim1965! I'm sure you both must be happy about her going home.

Looking forward to continuing hearing from you. When is her post-surgery follow up appointment?

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1 reply
kim1965 | @kim1965 | Mar 7, 2023
In reply to @hopeful33250 "That sounds so encouraging, @kim1965! I'm sure you both must be happy about her going home...." + (show)
@hopeful33250

That sounds so encouraging, @kim1965! I'm sure you both must be happy about her going home.

Looking forward to continuing hearing from you. When is her post-surgery follow up appointment?

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Follow-up appointment with surgeon is a week from this Thursday. Hopefully, she will have the pathology reports available. We had the original biopsy at the back from last April, but wondering how often the info after surgery changes often?

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Mar 7, 2023
In reply to @kim1965 "Follow-up appointment with surgeon is a week from this Thursday. Hopefully, she will have the pathology..." + (show)
@kim1965

Follow-up appointment with surgeon is a week from this Thursday. Hopefully, she will have the pathology reports available. We had the original biopsy at the back from last April, but wondering how often the info after surgery changes often?

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It is hard to say how the biopsy will turn out, @kim1965. However, I'm sure you will get a clearer picture of the treatment plan.

I look forward to hearing from you again. Keep in touch and please post with any questions or concerns.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Mar 9, 2023
In reply to @cottonpmhnp "Hello, I have a lesion on the tail of my pancreas. They thought it was a..." + (show)
@cottonpmhnp

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 @cottonpmhnp and welcome to Mayo Clinic Connect. I can certainly understand your confusion and concern regarding the biopsy. It is difficult not to have a succinct answer to a biopsy.

I have moved your post to a discussion with other members who have PNETs like, @outlawcancer @pavlina60 and @kim1965. While they might not have had any confusion regarding their biopsy, they might be able to offer their experiences with PNETs.

As you wait for your appointment with the surgical oncologist, I'm wondering what symptoms led you to the biopsy. Were other tests done to help with the diagnosis?

Here are a list of tests (from the Carcinoid Cancer Foundation website) used to diagnose and follow up if there is a suspicion of NETs. You might want to take a look and see if any of these were done.
--Diagnosis and Follow-up Tests
https://www.carcinoid.org/for-patients/diagnosis/diagnosis-and-follow-up-tests/
How long were you having symptoms prior to the biopsy?

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1 reply
cottonpmhnp | @cottonpmhnp | Mar 9, 2023
In reply to @hopeful33250 "Hello @cottonpmhnp and welcome to Mayo Clinic Connect. I can certainly understand your confusion and concern..." + (show)
@hopeful33250

Hello @cottonpmhnp and welcome to Mayo Clinic Connect. I can certainly understand your confusion and concern regarding the biopsy. It is difficult not to have a succinct answer to a biopsy.

I have moved your post to a discussion with other members who have PNETs like, @outlawcancer @pavlina60 and @kim1965. While they might not have had any confusion regarding their biopsy, they might be able to offer their experiences with PNETs.

As you wait for your appointment with the surgical oncologist, I'm wondering what symptoms led you to the biopsy. Were other tests done to help with the diagnosis?

Here are a list of tests (from the Carcinoid Cancer Foundation website) used to diagnose and follow up if there is a suspicion of NETs. You might want to take a look and see if any of these were done.
--Diagnosis and Follow-up Tests
https://www.carcinoid.org/for-patients/diagnosis/diagnosis-and-follow-up-tests/
How long were you having symptoms prior to the biopsy?

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Thank you for your reply. I was having nausea, vomiting and abdominal pain. It had been going on sporadically for a couple years but had worsened over the last 4 months. That was when they did the CT scan and found a lot of atrophy of my pancreas and then did an MRI that found the lesion.

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Mar 9, 2023
In reply to @cottonpmhnp "Thank you for your reply. I was having nausea, vomiting and abdominal pain. It had been..." + (show)
@cottonpmhnp

Thank you for your reply. I was having nausea, vomiting and abdominal pain. It had been going on sporadically for a couple years but had worsened over the last 4 months. That was when they did the CT scan and found a lot of atrophy of my pancreas and then did an MRI that found the lesion.

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@cottonpmhnp

It sounds as if you have had a lot of symptoms over the past couple of years and getting an answer will be a good thing. Have you had any of the lab tests mentioned in the article I posted?

It would be a good to bring a list of questions and concerns with you when you see the surgical oncologist. When is your appointment with the surgeon? Is there anyone who can accompany you to this appointment and help you ask questions and take notes?

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pavlina60 | @pavlina60 | Mar 9, 2023

Today I had a visit with my oncologist after the surgery. Original huge tumor of the tail of the pancreas was Grade2, but because it had spread to my liver it was ' upgraded' to Grade4. He is putting me on Lanreotide injections every month, followed by a 3mo CT scans. Monday ( March 13) is my first injection. I will let you know how I am taking it.
We are all in God's hands!

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 11, 2023
In reply to @pavlina60 "Today I had a visit with my oncologist after the surgery. Original huge tumor of the..." + (show)
@pavlina60

Today I had a visit with my oncologist after the surgery. Original huge tumor of the tail of the pancreas was Grade2, but because it had spread to my liver it was ' upgraded' to Grade4. He is putting me on Lanreotide injections every month, followed by a 3mo CT scans. Monday ( March 13) is my first injection. I will let you know how I am taking it.
We are all in God's hands!

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@pavlina60, I'm sure that's one upgrade you didn't want to get. You may appreciate this discussion about Lanreotide as you prepare for your first injection.
- Lanreotide Manufacturers: anyone have experience with either? https://connect.mayoclinic.org/discussion/lanreotide-manufactures/

@kim1965, how is Kim doing? How are YOU doing?
@outlawcancer, any updates? Recovery still improving day by day?

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1 reply
kim1965 | @kim1965 | Mar 11, 2023
In reply to @colleenyoung "@pavlina60, I'm sure that's one upgrade you didn't want to get. You may appreciate this discussion..." + (show)
@colleenyoung

@pavlina60, I'm sure that's one upgrade you didn't want to get. You may appreciate this discussion about Lanreotide as you prepare for your first injection.
- Lanreotide Manufacturers: anyone have experience with either? https://connect.mayoclinic.org/discussion/lanreotide-manufactures/

@kim1965, how is Kim doing? How are YOU doing?
@outlawcancer, any updates? Recovery still improving day by day?

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Kim has had a rocky first week after surgery on March 1st. Went home from hospital after 5th day of surgery. On 7th day she had trouble breathing and I took her to local ER and found lung infection in one lung, was transferred to surgery hospital to monitor and readjust some of the blood thinning medications. I have her back home on Friday resting comfortably. Per surgeon, we only have some very small tumors in right lobe of liver, and will probably resume Lanreotide injection and resume CAP/Tem Chemo pills once she heals from surgery to further reduce remaining cancer and then remove right lobe of liver to knock this NETway down to a mtn. Only issue going forward. Let me know if anyone has any questions on our progress that I can share that might help your case.

REPLY
1 reply
kim1965 | @kim1965 | Mar 13, 2023
In reply to @kim1965 "Kim has had a rocky first week after surgery on March 1st. Went home from hospital..." + (show)
@kim1965

Kim has had a rocky first week after surgery on March 1st. Went home from hospital after 5th day of surgery. On 7th day she had trouble breathing and I took her to local ER and found lung infection in one lung, was transferred to surgery hospital to monitor and readjust some of the blood thinning medications. I have her back home on Friday resting comfortably. Per surgeon, we only have some very small tumors in right lobe of liver, and will probably resume Lanreotide injection and resume CAP/Tem Chemo pills once she heals from surgery to further reduce remaining cancer and then remove right lobe of liver to knock this NETway down to a mtn. Only issue going forward. Let me know if anyone has any questions on our progress that I can share that might help your case.

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@outlawcancer
At what point did the pain after eating very small amounts start to lessen? We we are on day 12 from surgery.

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