1. < Neuroendocrine Tumors (NETs)

Scared - Suspected NET on tail of the pancreas

Posted by rockchick @rockchick, Jan 6, 2023

Confused by the information online re: NETs. There is a 2.3 x 1.7 mass on the tail of my pancreas with no vascular activity. The doctor is going to skip the EUS/FNA, go straight to surgery to remove it, and biopsy it then. Blood tests are normal. Conflicting info - are neuroendocrine tumors always cancer or can they be benign? Has anyone else had this surgery to remove a NET and how much pain, recovery, etc...is involved?

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

pavlina60 | @pavlina60 | Feb 20, 2023

@hopeful33250. Slowly transitioning to soft food. Cannot eat much. And most foods give me diarrhea :(. I am still losing weight, which is my concern, so trying to incorporate butter, milk, fat. Very slow progress :(. I was hoping to be able to be more independent and cooking et.al. by now (3 weeks). I guess I am inpatient :).

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Feb 20, 2023
In reply to @pavlina60 "@hopeful33250. Slowly transitioning to soft food. Cannot eat much. And most foods give me diarrhea :(...." + (show)
@pavlina60

@hopeful33250. Slowly transitioning to soft food. Cannot eat much. And most foods give me diarrhea :(. I am still losing weight, which is my concern, so trying to incorporate butter, milk, fat. Very slow progress :(. I was hoping to be able to be more independent and cooking et.al. by now (3 weeks). I guess I am inpatient :).

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It does take time for your digestive system to adjust to the changes made during surgery, @pavlina60, so be gentle with yourself. Three weeks is really not very long.

In order to minimize the diarrhea, you might consider low fat foods and small meals, rather than the traditional larger meals with a higher fat content that you may have eaten prior to surgery. If you still have problems, you might contact the surgeon and see what type of eating plan he/she recommends.

Most of us, after surgery, experience some weight loss. Once again, contact your doctor if the weight loss seems excessive. Will you continue to post as you have questions or concerns?

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lastround | @lastround | Feb 21, 2023

My son is a doctor, not an oncologist, but he suggested enzymes to help with the diarrhea. Says with no food in your stomach it increases the chances of diarrhea.

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lastround | @lastround | Feb 21, 2023

My son is a doctor, not an oncologist, but he suggested enzymes to help with the diarrhea. Says with no food in your stomach it increases the chances of diarrhea. There is nothing to break down the food

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pete1962 | @pete1962 | Feb 23, 2023
In reply to @hopeful33250 "Hello @pete1962 and welcome to the NETs discussion on Mayo Clinic Connect. I am glad that..." + (show)
@hopeful33250

Hello @pete1962 and welcome to the NETs discussion on Mayo Clinic Connect. I am glad that you found this forum. It is good to connect with others who have had this type of cancer. I'm sure you will find support and encouragement.

I have had three surgeries for NETs in the upper digestive tract over the past 20 years and my last surgery was about 7 years ago. I now have follow-up endoscopies as well as MRIs of the liver and pancreas.

I see that liver lesions were found on a scan in December. You mentioned that they were confirmed as NETs. I'm wondering how this was determined. Did you have a liver biopsy? Also, how are you feeling now?

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Hi hopeful33250

Thanks for your successful story. Examples like yours certainly help me to stay positive.

Your question is very valid and I actually realized that I don't know whether it really is a NELM. I did not have a biopsy. But together with all the information on Mayo Connect I was able to put a fairly comprehensive questionnaire together for my visit on Monday.

Peter

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Mar 13, 2023
In reply to @pete1962 "Hi hopeful33250 Thanks for your successful story. Examples like yours certainly help me to stay positive...." + (show)
@pete1962

Hi hopeful33250

Thanks for your successful story. Examples like yours certainly help me to stay positive.

Your question is very valid and I actually realized that I don't know whether it really is a NELM. I did not have a biopsy. But together with all the information on Mayo Connect I was able to put a fairly comprehensive questionnaire together for my visit on Monday.

Peter

Jump to this post

Hello @pete1962

I see that you had an appointment at Mayo last month. I hope that went well for you and that you got some good information regarding follow-up and possible treatments.

I look forward to hearing from you again. If you are comfortable doing so, will you please share any updates since that appointment?

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