Found PNET on tail of pancreas but told it’s nonfunctional

Posted by tinerobison @tinerobison, Jul 5, 2023

My husband has been battling pancreatitis like pain for over 2 years his symptoms have progressively gotten worse . He has substernal upper stomach pain, diarrhea, severe nausea ,sweating ,blurred vision, confusion , indigestion, belching, flushing of skin but Hopkins found an Neuro endocrine tumor in the tail of his pancreas and they insists it’s a nonfunctional PNET and that it’s referred pancreatitis pain. I can tell you as his wife and as a nurse his pain is not normal . we go for lab work tomorrow to test for insulinoma or somastinoma but they are convinced that’s not the problem but they have no recommendations for his pain and symptoms. has anyone had a difficult time getting answers ?

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

tinerobison | @tinerobison | Jul 8, 2023

In reply to @michellesimpson10 "Mine was non functional" + (show)

Also why did they decide to take it out?

michellesimpson10 | @michellesimpson10 | Jul 8, 2023

In reply to @tinerobison "What kind of symptoms did you have how did they find it?" + (show)

I had chronic pancreatis, abdominal swelling, nausea, heartburn, uncontrolled high blood sugars over 280-400 without cause, dizziness, loose stools, shortness of breath and feet would swell. I am not a drinker or smoker or drug user and rarely use over the counter medicines. I have lupus and fibromyalgia and thought some symptoms were from that
I kept pushing doctors to not write it off as IBS or gluten allergy or Silliac. I wouldn’t take the medicines they wanted me to for digestive issues and elevated blood sugars because I told them they were wrong. So after I went to a new gastroenterologist my other doctor referred me to (after he said my abdominal swelling was because I was aging like an old man and carrying my weight there even though I have very thin legs and arms) she did a colonoscopy and endoscope and ordered an MRI. The MRI showed a mass in my pancreas. Then I had a surgical biopsy and that specialist sent it it to pathology to see if it was a splenule or a neuroendocrine tumor. The biopsy seemed to support a splenule but was not definitive. Fortunately my gastroenterologist also consulted a oncologist because she thought it was the NET. Then I had a SPECT CT which wasn’t definitive so finally I had a PET Scan which my oncologist showed the NET like a glow bug. So he gave me options to wait and see or have it removed. My dad was adopted, I was in the military and exposed to who knows what (non combat) and I’m not a wait and see kind of person because if it was cancer, it doesn’t just go away if left alone. So I opted for the surgery in May of this year. They removed the last 1/3 of my pancreas and my spleen. Pathology showed the NET encapsulated the cancer and it had not spread. So for now I’m 8 weeks post surgery and will be followed up with scans and blood tests to hopefully catch anything else early again.
I hope this all helps. The best advice I can give is to listen to your body and gut and keep advocating for yourself.

tinerobison | @tinerobison | Jul 8, 2023

In reply to @michellesimpson10 "I had chronic pancreatis, abdominal swelling, nausea, heartburn, uncontrolled high blood sugars over 280-400 without cause,..." + (show)

@michellesimpson10

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Thank you this information is very helpful!

tinerobison | @tinerobison | Jul 8, 2023

In reply to @tinerobison "Thank you this information is very helpful!" + (show)

How are you feeling since surgery? My husband wants to give up cause no one is listening. I told him we need to keep pushing!!

michellesimpson10 | @michellesimpson10 | Jul 8, 2023

In reply to @tinerobison "How are you feeling since surgery? My husband wants to give up cause no one is..." + (show)

Please keep pushing forward. Look for a dr that specializes in NETs
I’m keeping you all in my prayers

tinerobison | @tinerobison | Jul 8, 2023

In reply to @michellesimpson10 "Please keep pushing forward. Look for a dr that specializes in NETs I’m keeping you all..." + (show)

Thank we will! Ironically our last name is Simpson too! Robison is my maiden name. Thanks for the prayers! If we can get an appointment at Mayo we’re headed there from PA.

michellesimpson10 | @michellesimpson10 | Jul 8, 2023

In reply to @tinerobison "Thank we will! Ironically our last name is Simpson too! Robison is my maiden name. Thanks..." + (show)

Please keep us updated. This groups really helped me prepare for surgery and ease my concerns

RM | @mmerry | Jul 28, 2023

In reply to @vmchow "I also just had a distal in June 22. 2 cm NET, no obvious metastasis. How..." + (show)

I have a 1.7cm Pnet that was found on tail about 4 months ago. At this point my provider will not biopsy it but are doing the watch and survey every 6 months program with scans. Did anyone else receive this recommendation?

vmchow | @vmchow | Jul 28, 2023

In reply to @mmerry "I have a 1.7cm Pnet that was found on tail about 4 months ago. At this..." + (show)

Many things go into this kind of decision. How old are you? Are you symptomatic? If there was no biopsy, how do they know it's a NET? My surgeon also told me to wait and watch, but i went ahead with a FNAC and it came back expressing chromogranin. Then dota confirmed it and showed no obvious spread, just the one tumor. I did another MRI in February. The tumor had remained static. I opted to have it out anyway. If the tumor is not changing and you have no symptoms and your doctor thinks it's just a serous cyst, then wait and watch. But if you aren't sure of what it is, why are the docs taking a chance? These are just thoughts. There's a tremendous amount of controversy about wait and watch. I'd like to know your doctor's rationale for waiting, but I'd also follow his advice. I'm 65 and didn't want to chance having to have this same surgery, which is major, when i was older and more frail.

RM | @mmerry | Jul 29, 2023

In reply to @vmchow "Many things go into this kind of decision. How old are you? Are you symptomatic? If..." + (show)

Thanks for your thoughts. I am in Canada. I am 56 with no symptoms. A Dototate 68 PET scan was done which showed uptake in the pancreas lesion. In Canada and Europe the protocol is that for any tumor less that 2 rms it is a survelliance approach. So at 1.7 cms I am in that boat. Scans every 6 months going forward. My understanding is that it’s purely a risk balance of touching the pancreas and creating issues versus the higher probability it will not grow or spread. I know I would feel more comfortable with a biopsy to know if it’s a fast grower is my thinking.