Distal pancreactomy with shrinking cyst

Posted by sushie @sushie, Oct 16, 2022

Hello
I am 36 yrs women, detected with a 5.8 cm cyst on the tail of my pancreas on Aug 16 and had acute pancreatitis. 2- weeks after which I became normal with no pain or complications. In the followup with EUS-FNA it came to be non malignant cystic neoplasm with extensive necrosis in tail. On followup with Mayo Clinic doc they prescribed me for a MRI. Results came on Oct 14 showing 3.5 cm size and slight ductal increase. The doctor suspects it’s a mucinous cystic adenoma and suggested for a distal pancreactomy, splenectomy and removal of gall bladder. I am wondering since the cyst decreased by 2.3 cm in 2 months in its own is it worth waiting for another 3-6 months to see its status and then thinking of surgery. Did anyone run into similar situation like me?

Interested in more discussions like this? Go to the Pancreatic Cancer Support Group.

Good luck they tell me if anything is working keep it up until it’s not helping anymore - I got Pancreatic
Tumor on spleen and I’m trying a different chemo because the first didn’t work. I’m at Dana/Brigham

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@sushie, I think you are asking a good question. Distal pancreactomy, splenectomy and removal of gall bladder is a major surgery and you want to feel comfortable going into it. That said if the cystadenoma is causing symptoms, such as pain, they are usually treated - removed with surgery.

I'm tagging a few other members like @elliek @stageivsurvivor @faithann64 @wrolsen, who may have experiences to share with you.

You might also be interested in this related discussion:
- Cyst on Pancreas? https://connect.mayoclinic.org/discussion/cyst-on-pancreas/

@sushie, did you ask you Mayo team about the risks of waiting to see if the cyst shrinks further or why the cyst got smaller?

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@colleenyoung

@sushie, I think you are asking a good question. Distal pancreactomy, splenectomy and removal of gall bladder is a major surgery and you want to feel comfortable going into it. That said if the cystadenoma is causing symptoms, such as pain, they are usually treated - removed with surgery.

I'm tagging a few other members like @elliek @stageivsurvivor @faithann64 @wrolsen, who may have experiences to share with you.

You might also be interested in this related discussion:
- Cyst on Pancreas? https://connect.mayoclinic.org/discussion/cyst-on-pancreas/

@sushie, did you ask you Mayo team about the risks of waiting to see if the cyst shrinks further or why the cyst got smaller?

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I am not having symptoms, they told probably it is due to endoscopic FNA (as some fluids were drawn).

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Finally I went through the surgery on Nov 21. Had distal pancreactomy, removal of spleen and gall bladder. Thankfully it was a fibroid cyst and was not malignant. However, in a 6- weeks followup the physician told me that I have fluid accumulation in abdomen due to leaky pancreas. And they need to put in stents for drainage. Did anyone face this problem? How painful or other what other symptoms may appear after placing the stents?

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@sushie

Finally I went through the surgery on Nov 21. Had distal pancreactomy, removal of spleen and gall bladder. Thankfully it was a fibroid cyst and was not malignant. However, in a 6- weeks followup the physician told me that I have fluid accumulation in abdomen due to leaky pancreas. And they need to put in stents for drainage. Did anyone face this problem? How painful or other what other symptoms may appear after placing the stents?

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Hello I am 44 y/o male and I was diagnosed with a PNET about 2 months ago. It is located on the tail of the pancreas. I am scheduled to have surgery next week to have a distal pancrectomy and splenectomy. Of course I am terrified. Can you tell me how your surgery went? What I should expect? My Dr’s have given information but it’s best coming from someone who has actually experienced the procedure. I am aware everyone’s recovery is different. And by the way the dr did tell me that about 40% of patients after surgery and removal of the drainage tube will afterwards experience drainage. She called it “pancreatic juices.” Any info will help thank you.

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Hello
The surgery went well (~ 5 hours). There was no pain for 24h as I was given painkillers in the spine. But there was a tube that went through the nose-mouth-stomach to drain out juices for around 36 h, which made me feel nauseous severely. Recovery for me was good but I had pain (as expected), the main problem with me was oxygen levels, one of my lungs were not working properly post surgery. I kept on walking, using respirator to get it fixed. Appetite was very less, and it is not yet normal. Little portion sizes make me full, I have a big nausea problem when stomach is empty. Going for my endoscopic ERCP today. Hope this would be helpful. Good luck!

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@sushie

Hello
The surgery went well (~ 5 hours). There was no pain for 24h as I was given painkillers in the spine. But there was a tube that went through the nose-mouth-stomach to drain out juices for around 36 h, which made me feel nauseous severely. Recovery for me was good but I had pain (as expected), the main problem with me was oxygen levels, one of my lungs were not working properly post surgery. I kept on walking, using respirator to get it fixed. Appetite was very less, and it is not yet normal. Little portion sizes make me full, I have a big nausea problem when stomach is empty. Going for my endoscopic ERCP today. Hope this would be helpful. Good luck!

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Hello and thank you for the helpful information. I’m terrified of the surgery.

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@outlawcancer

Hello and thank you for the helpful information. I’m terrified of the surgery.

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I had a distal pancreatectomy and splenectomy in July 2022. I am 66 years old. Everyone reacts differently, but my experience was mostly positive. I was in the hospital for five days. It was robot assisted surgery, and there were five small incisions. Pain was controlled by IV first day, then orally thereafter. JP drain was removed when I was discharged. Eating small portions from low fat diet followed. I was prescribed Regelan to help with digestion, and self administered Lovenox shots to prevent blood clots for 28 days. I was prescribed pain killers, but just taking Tylenol was sufficient for me. It's a scary time leading up to the procedure because you don't know what to expect, but remember that there are people who are working hard to make the experience as successful and painless as possible. I hope this helps a little.

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@sushie

Hello
The surgery went well (~ 5 hours). There was no pain for 24h as I was given painkillers in the spine. But there was a tube that went through the nose-mouth-stomach to drain out juices for around 36 h, which made me feel nauseous severely. Recovery for me was good but I had pain (as expected), the main problem with me was oxygen levels, one of my lungs were not working properly post surgery. I kept on walking, using respirator to get it fixed. Appetite was very less, and it is not yet normal. Little portion sizes make me full, I have a big nausea problem when stomach is empty. Going for my endoscopic ERCP today. Hope this would be helpful. Good luck!

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Can you please share where your surgery took place? Thanks

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@ken240

I had a distal pancreatectomy and splenectomy in July 2022. I am 66 years old. Everyone reacts differently, but my experience was mostly positive. I was in the hospital for five days. It was robot assisted surgery, and there were five small incisions. Pain was controlled by IV first day, then orally thereafter. JP drain was removed when I was discharged. Eating small portions from low fat diet followed. I was prescribed Regelan to help with digestion, and self administered Lovenox shots to prevent blood clots for 28 days. I was prescribed pain killers, but just taking Tylenol was sufficient for me. It's a scary time leading up to the procedure because you don't know what to expect, but remember that there are people who are working hard to make the experience as successful and painless as possible. I hope this helps a little.

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Thank you for the information . It is very helpful knowing what people have experienced and what I should expect. Although outcomes and how one feels depends on each individual. But lil bits here n there help us tremendously. Wish you well and hope you are doing well.

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