Just diagnosed with pancreatic NET stage 1

P.S. I am a 73 year old male.

Hello! I had an NET show up on a CT scan that had been done in November, 2007 because of recurrent pain on my right side. The doctor called next the next day and told me that nothing on the CT showed anything that would cause the pain. However he said it showed a mass in the tail of my pancreas. They did a biopsy and told me it was malignant. I was given an appoint meant with a specialist for about a week later. In the meantime I started Googling pancreatic cancer and found out that I had a 5% chance of surviving the next 5 years. I assumed I was going to be dead in less than 5 years.

I didn’t have much hope till I saw the specialist. He immediately reassured me that if you had to have pancreatic cancer this was the type to have. He said the tumor was 2.5 centimeters and they generally didn’t start to spread till about 3 centimeters. I was scheduled for surgery for Friday, January 11, 2008. He told me that it would take about 4 hours and I should be able to return to work the following Monday.

The surgery was more complicated than they thought, because of a blood vessel, and lasted just over 10 hours and they took my spleen as well. I was put in ICU and Saturday was moved to a step down room on the same floor. But, unfortunately, I went into total respiratory arrest that evening. I spent the next week in ICU for a nasty case of double pneumonia.

But the surgery was successful and over 16 years later, I’m still hanging in there. I would recommend you get a second opinion on surgery. I would think it would be better to get the tumor out while it’s still small.

But the main thing is to not worry too much. You’re lucky that, like me, it was caught early, before there were symptoms.

Good luck!

Hello @ddepatie and welcome to the NETs support group on Mayo Connect. Since you posted in the pNETs discussion group, I'm guessing that you have been diagnosed with pNETs.

Please share as you are comfortable doing so, a little about your diagnosis and what treatment, if any, you are getting.

bowels are loose

I do hope that today is a better day, @c2pricorn66. Would love to have an update when it's convenient for you.

Fortunately, I never had surgery. Just chemo.

It sounds like you made the right decision. But it's a courageous decision and i wish you all the best.

Thanks 🙏 the size is around 19 X 16 mm

Day 1 NBM. On PCA pump for pain, Drain. Catheter.
Day 2 Surgeon said he can have soft diet. He developed fever, Blood Culture collected, CXR He is eating lots of fruits.
Day 3 Still on PCA, drain. Minimal abdo cramps. Pain 6/10 around abdo, key holes and drainage sites. Still having trouble walking due to pain.
Hopefully today D4 is different and better. I'll keep updating as day n weeks n months go by. Hope this help others to have ideas of the progress

The only cure is removal of the primary tumor before it spreads. A Whipple surgery is an option and I would recommend Johns Hopkins and be sure you are going to a NET specialist.