1. < Neuroendocrine Tumors (NETs)

Has anyone chosen the Watch and Wait and regretted that choice?

Posted by billyfeet @billyfeet, Apr 11, 2023

I am new to this group and thankful for the insight offered by those who post their experiences. I am a 68 year old man in good health. A CT scan in February found that I have a 2.5 CM Grade 2 PNET on the tail of my Pancreas, confirmed by biopsy. I have no symptoms and am in the process of evaluating my options. I have an excellent UCSD Moores Cancer Center near me that I am using. After confirming the type and grade of tumor with biopsy I was referred to a surgeon who specializes in Pancreas surgery. She advises a distal pancreatectomy with removal of spleen also. I am probably going to have this surgery, but would like to hear from patients who have done watchful waiting with all grades of PNETS. What has happened in the course of your disease? Thanks to anyone who has experience with this.

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

vmchow | @vmchow | May 24, 2023
In reply to @milagro45pr "I had surgery on March 10. It was an open distal with splenectomy. Spent 8 days..." + (show)
@milagro45pr

I had surgery on March 10. It was an open distal with splenectomy. Spent 8 days in the hospital because I developed pneumonia within 24 hours after surgery. Had drain removed before I went home with no complications after. After I went home I rested when I felt tired and walked a little bit everyday and built up from there. Managing pain I used ibuprofen and Tylenol and it worked great. There was no need for me to take narcotics. Diet wise I ate very two hours smaller portions because I would get pain if I ate two much. I stayed out of work for six weeks. Today I feel great. Back to my regular eating schedule. Not over eating. Lost 14 pounds. All margins were negative so I didn’t need further treatment. Follow up and scans every six months for the next five years.

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Wonderful comprehensive description. Hearing these stories is calming me down. You are brave and generous people and i feel like I have a community. God bless

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Teresa, Volunteer Mentor | @hopeful33250 | May 24, 2023
In reply to @vmchow "Wonderful comprehensive description. Hearing these stories is calming me down. You are brave and generous people..." + (show)
@vmchow

Wonderful comprehensive description. Hearing these stories is calming me down. You are brave and generous people and i feel like I have a community. God bless

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I am glad that this forum has helped you, @vmchow. Keep in touch as you can.

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