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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splendrous | @splendrous | Feb 11 5:01pm
In reply to @ginnym3 "Hi. I too am on a watch and wait recommendation and am very uncomfortable with that...." + (show)
@ginnym3

Hi. I too am on a watch and wait recommendation and am very uncomfortable with that. My NETs were found incidentally - went in for an excruciating nerve pain issue in the front of one leg and they did a CT... and wow. I went immediately to my PC physician at Mayo and was referred to Dr. Jason Starr in Jacksonville. I have a primary tumor in my small intestine. Two colonoscopies later, and one biopsy, no one can get to my tumor non-surgically so a biopsy was done from a spot/tumor big enough to get viable samples on my peritoneum. The many, many spots on my liver were too small and not viable for the biopsy. Biopsy confirmed positive for malignancy - well differentiated neuroendocrine tumor, grade 2. I was diagnosed with stage 4, metastatic cancer with tumors in my small intestine, liver, peritoneum, and lymph nodes. Right now my only symptom is pain, sometimes significant, up under my right ribs (from liver I assume). I am going to MD Anderson in Houston in two weeks for a second opinion on my treatment recommendation. I am seeing Dr. Daniel Halperin. Is anyone familiar with him? I did a lot of research on him (and others) and it appears he is doing a lot of trials and research.

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I realize your post is from April of 2023. I am interested in how your 2nd opinion visit went with Dr Halperin at MD Anderson and what treatment you have had in the last two years. How are you doing? I assume you are continuing to see Dr Starr.

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ljeanmason | @ljeanmason | Feb 12 12:56pm

Hello there....I was diagnosed, incidentally, with a lesion on my pancreas in March 2024. In May 2024, I had an endoscopic ultrasound with biopsy which confirmed a 1st stage pancreatic neuroendocrine tumor. I was referred to a surgeon who specializes in GI cancers. After MRI, CT scan, and labs, he recommended a distal pancreatectomy/splenectomy as my tumor was in the body of the pancreas. He removed (robotically) 50% of the pancreas because of where the tumor was located in the body. I was referred to an oncologist who will follow me for five years with labs and CT as I was told these type tumors have approximately 18-20% recurrence rate. So far, I am doing great, however, am on digestive enzymes (Zenpep), which I began in December, and they have helped tremendously.

Hope you have met with very knowledgeable and competent medical professionals as I did, and guided me through the process professionally and compassionately.

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catalinaharley752 | @catalinaharley752 | Feb 12 3:10pm
In reply to @lindaldotson "Thank you. On the lightheadedness- I've only been diagnosed with NETs for six months. I've experienced..." + (show)
@lindaldotson

Thank you. On the lightheadedness- I've only been diagnosed with NETs for six months. I've experienced a couple of profound episodes of being lightheaded that required me to suspend my activity and wait for the episode to pass. Was this what you experienced?

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I also experience profuse sweating similar to hot flashes and weakness, I lay down or did still for about 1/2 hour and my wife will quickly give me something to eat, similar to what low sugar episodes mimic. I’ve had these episodes since 1971 and never could the Doctors figure it out till I went to a digestive Dr for what I thought was trapped gas and bouts of unannounced diarrhea. My liver is 75 % encased in lesions and pancreas has a few big tumors up to 2”. I’m still kicking it…

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