1. < Neuroendocrine Tumors (NETs)

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 ?

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jan 9 7:40pm
In reply to @tinerobison "So my husband had a nerve block December 26th(steroid injection in his stomach) for his pancreatic..." + (show)
@tinerobison

So my husband had a nerve block December 26th(steroid injection in his stomach) for his pancreatic pain, he had about a week of relief sadly his pain came back. My mom witnessed him not feeling well after dinner the other day at family gathering. He was flushed in the face and then was pale again and didn’t feel well. My mom went home and was googling his symptoms. I told her this is what I have been talking about but his symptoms are not important to the most educated physicians at Hopkins and Mayo. They are only concerned at seeing hormone levels and size of the tumor. We had a friend tell us that we don’t have healthcare anymore we just have sick care. And sadly as a registered nurse and what I have witnessed with my husband I couldn’t agree more. We are paying out of pocket tomorrow and my husband is having a Prenuvo scan. I am praying they can send us in a direction of where to get help.

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So sorry to hear that your husband is in so much pain, @tinerobison. I hope that you get some helpful information from the new scan.

Will you keep in touch as you seek answers?

REPLY
pcolette | @pcolette | Jan 13 8:20pm
In reply to @michellesimpson10 "I had chronic pancreatis, abdominal swelling, nausea, heartburn, uncontrolled high blood sugars over 280-400 without cause,..." + (show)
@michellesimpson10

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.

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Thank you for posting your experience. I'm due to have the same surgery (portion of pancreas tail and spleen removal) in a couple of weeks. I'm an active 72 year old male and am a bit anxious about what to expect regarding recovery time both in hospital and at home. My caregivers have been very supportive and informative but are somewhat vague on what I should expect. Likely because each patient is different. I was just curious about your recovery. Thank you.

REPLY
2 replies
michellesimpson10 | @michellesimpson10 | Jan 13 10:48pm
In reply to @pcolette "Thank you for posting your experience. I'm due to have the same surgery (portion of pancreas..." + (show)
@pcolette

Thank you for posting your experience. I'm due to have the same surgery (portion of pancreas tail and spleen removal) in a couple of weeks. I'm an active 72 year old male and am a bit anxious about what to expect regarding recovery time both in hospital and at home. My caregivers have been very supportive and informative but are somewhat vague on what I should expect. Likely because each patient is different. I was just curious about your recovery. Thank you.

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I’ll add you to my prayers for your surgery and recovery.
My recovery was pretty good. It was painful for the first few days however I also have lupus and fibromyalgia which over reacts to any injury or pain.
Keep on your medications to stay ahead of the pain and keep hydrated. I also made sure to have stool softeners to help with the constipation from pain medications. Chicken broth, toast and protein drinks (fair life protein from Costco is my go to protein) were very helpful for nutrition. I had a body pillow to place in the incision side to protect from rolling over or my husband bumping me.
The hospital gave me plastic type would covers and medical tape to cover the incision when I showered.
I used a shower chair in my shower and a hand held shower head to aid in bathing. My daughter got into the shower with me to help with handing me things and for stability in standing.
I also had my legs elevated on a pillow to help me sleep in my back as I’m normally a side sleeper.
I wish you the best and please reach out with updates and any questions.
Also don’t be worried about calling your doctor if you feel anything is off.

REPLY
1 reply
tinerobison | @tinerobison | Jan 14 10:31am
In reply to @pcolette "Thank you for posting your experience. I'm due to have the same surgery (portion of pancreas..." + (show)
@pcolette

Thank you for posting your experience. I'm due to have the same surgery (portion of pancreas tail and spleen removal) in a couple of weeks. I'm an active 72 year old male and am a bit anxious about what to expect regarding recovery time both in hospital and at home. My caregivers have been very supportive and informative but are somewhat vague on what I should expect. Likely because each patient is different. I was just curious about your recovery. Thank you.

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May I ask how big your tumor is?

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2 replies
kim1965 | @kim1965 | Jan 14 12:28pm
In reply to @tinerobison "May I ask how big your tumor is?" + (show)
@tinerobison

May I ask how big your tumor is?

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@tinerobison My wife was diagnosed with NET in April 22, with about a 3x5cm mass on tail of pancreas, with spread to liver with too many tumors to count. It was not operable at that point. But after 9 months of CAP/TEM chemo, she was able to get about 80% reduction in tumors in both areas, and allowed for surgery as your having, mass on pancreas removed, spleen removed, gall bladder removed, and debulked as many of the tumors on liver as possible. Since then PET scans are only showing the NET still in the liver, our medical team at Froedtert, has given us the option of a liver transplant this summer. We have completed 3 of 4 PRRT treatments to hopefully keep the NET only in the liver, a requirement for the transplant. Kim was a type 2 dietabetic before the surgery, and some that go through this surgery since the tail of pancreas controls the insulin your body gets, will need to monitor that possibly, but that isn't the case with all patients. Suggestions we have for you are to walk as much as you can after surgery as it will help you immensely with pain. My wife is 58, has a come a long way from a stage 4 diagnosis, to a very good chance to live many more decades. Follow your medical teams advice, ask alot of questions, and let us know how we can help with getting you through this. We all got you, you got this!

REPLY
pcolette | @pcolette | Jan 14 2:50pm
In reply to @michellesimpson10 "I’ll add you to my prayers for your surgery and recovery. My recovery was pretty good...." + (show)
@michellesimpson10

I’ll add you to my prayers for your surgery and recovery.
My recovery was pretty good. It was painful for the first few days however I also have lupus and fibromyalgia which over reacts to any injury or pain.
Keep on your medications to stay ahead of the pain and keep hydrated. I also made sure to have stool softeners to help with the constipation from pain medications. Chicken broth, toast and protein drinks (fair life protein from Costco is my go to protein) were very helpful for nutrition. I had a body pillow to place in the incision side to protect from rolling over or my husband bumping me.
The hospital gave me plastic type would covers and medical tape to cover the incision when I showered.
I used a shower chair in my shower and a hand held shower head to aid in bathing. My daughter got into the shower with me to help with handing me things and for stability in standing.
I also had my legs elevated on a pillow to help me sleep in my back as I’m normally a side sleeper.
I wish you the best and please reach out with updates and any questions.
Also don’t be worried about calling your doctor if you feel anything is off.

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Thank you!

REPLY
pcolette | @pcolette | Jan 14 2:54pm
In reply to @tinerobison "May I ask how big your tumor is?" + (show)
@tinerobison

May I ask how big your tumor is?

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My tumor is 3.7 X 3.7 X 3.8 cm in the tail.

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