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.

c2pricorn66 | @c2pricorn66 | Sep 29, 2023

In reply to @colleenyoung "@c2pricorn66 how are you and your partner doing?" + (show)

Good morning. Mentally exhausted and the fear of what future lies ahead but he is doing okay 🙏😇. I keep telling him to always have faith up above and do the right thing for his early and good recovery. He is eating (regular) well in conjunction with recently charted creon tablet due to abdo pain after eating, walking and still has a drain week 3 hoping to be removed on Friday 🤞. Everyday is getting better with🙏. He will be having CT and endoscopy in 6 months time.(🤞hoping everything will be okay.

c2pricorn66 | @c2pricorn66 | Sep 29, 2023

In reply to @tyrol123 "Hello how did you get to find out the tumor?" + (show)

Hi tyrol123
Partner was scheduled for bilateral hernia repair. Prior to that, he's had CT scan where they found lesions in his pancreas. So it was further investigated via gastroscopy/biopsy and was found a nonfumctioning, benign and encapsulated tumour in the tail also a little shadow in the head. PET scan (dotate) confirmed dormancy. But surgeon wants it removed due to its size and might change its behaviour. It says it's rare but finding it more and more cases but most metastasise

milagro45pr | @milagro45pr | Oct 1, 2023

In reply to @lully2505 "Thank you for your detailed response. I am glad to hear she is home, I hope..." + (show)

I can tell you a little bit about possibility of becoming a diabetic. Not all cases end up with diabetes. Before I had me distal with splenectomy I was what they called aprediabetic. My sugars ranging up to 115 fasting in the morning. After surgery my numbers are still ranging within that amount. Hasn’t gone higher. I am 6 months post op.

c2pricorn66 | @c2pricorn66 | Oct 1, 2023

In reply to @tyrol123 "Hello how did you get to find out the tumor?" + (show)

Hang on there. Things will be okay once you get through the other end (recovery). 've been through this for my partner and wasn't pleasant. I feel the world just collapsed on us but there's nothing we can do about it except face it.

Make sure you're eating nutritious food pre and post surgery. No lifting just passive walk everyday post op. Might experience some shoulder pain from the gas. Should you experience tummy ache post eating discuss with your surgeon, might put you on creon tablet like my partner. He's still got a drain D15 hoping to get it out next Friday. Have faith on your surgeon, yourself and up above.

tinerobison | @tinerobison | Oct 8, 2023

In reply to @lully2505 "Hello, thank you for reaching out. This is gonna be long, so I apologize in advance...." + (show)

@lully2505

Hello, thank you for reaching out. This is gonna be long, so I apologize in advance.
Yes, I have a recently diagnosed PNet on the tail of the pancreas, towards the body. I found it incidentally about a year ago when I went to an urgent care due to stomach pain unrelated to the tumor. A CT scan done at the Urgent Care saw a "cyst" on the pancreas and they recommended I see a specialist and have a pancreatic protocol MRI done. I had to wait almost 3 months to get an appointment with a specialist and when I went in, he dismissed my concerns and said it was nothing to worry about. That was in Feb. 2023
I left the office with a bad feeling, scheduled an appt with my PCP but he was not available until July 14th. I was getting ready to get married on June 11th, so I archived it in the back of my mind until I could see the doctor. I had no symptoms. Fast fwd to July 14 2023, my GP was appalled that the specialist did nothing. He requested the MRI stat, as well as a CA-19 blood test, which was slightly elevated at 37. By luck, my husband has a work contact at Cancer Specialists of North Florida, and she was able to help us get the MRI done and scheduled with an Oncologist.
Between now and then, I have had a biopsy via endoscopy, that confirmed a 1.2cm PNet on tail of pancreas. Well differentiated, stage 1, non functional. I did a Gallium 68 Pet scan and it confirmed the tumor has not spread.
I spoke with multiple doctors, surgeons and Pnet specialists until I got to see someone at Mayo in Jacksonville. Dr Stauffer recommended what all the other doctors had already said - we could watch and wait, however, I am 41 years old, healthy, normal weight, no other health issues. I opted to have surgery to have it removed before it has a chance to spread. Surgery is scheduled for October 13th (Friday, the surgeon was widely available!!). From what I understand, it will be laparoscopic distal, removing tail of pancreas, spleen and any lymph nodes around it.
I am terrified of surgery but the watch and wait approach would not work for me. I have terrible anxiety and my mental health has been a mess since July.
You can imagine we have been a mess, my poor husband having to deal with all this with me within a month of being married. He is very supportive, I don't know what I would do without him right now.
I am looking for others with a similar experience, just to ease my anxiety towards surgery, recovery, what to expect. I am thankful to have found this resource. Thanks for reading!

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How did you get the doctors to agree on surgery? We can’t even get that as an option!

lully2505 | @lully2505 | Oct 8, 2023

In reply to @tinerobison "How did you get the doctors to agree on surgery? We can’t even get that as..." + (show)

You need to fight. I spoke to a few different doctors, definitely get a Net specialist. Only one said they wouldn't recommend surgery. The others told me it was my decision. I think they also take into consideration your age and overall health. I'm going in on Friday, 10/13. I'm terrified, but I just want this thing out before it has a chance to spread. Website are you located? Try a virtual appointment with Dr Starr at Mayo clinic Jacksonville. Good luck on your journey, keep us posted!!

c2pricorn66 | @c2pricorn66 | Oct 21, 2023

Hello all. My hubby's (63) lesion was found by surprised via CT for hernia. Surgeon here in Australia had suggested to remove the non functioning, benign, static 10 cent size tumour before it spread. He's had his distal panc & spleen via lap. Now he has recovered week 7 but still has his drain attach and being reviewed weekly to see if output getting smaller. He developed fever and have on on Amoxicillin for the presence of bugs. He was also put on creon 25,000 3x a day and having abdo pain at times. How long other people keeps the drain ?🙏
Lina

c2pricorn66 | @c2pricorn66 | Oct 21, 2023

In reply to @milagro45pr "I can tell you a little bit about possibility of becoming a diabetic. Not all cases..." + (show)

How are you now ? Have you had your vaccines 2 months post surgery ? and current CT ? Hubby still draining week 7 post op but getting lesser hoping to get it out soon. Have u had problem with leak ?

milagro45pr | @milagro45pr | Oct 21, 2023

In reply to @c2pricorn66 "How are you now ? Have you had your vaccines 2 months post surgery ? and..." + (show)

I never got the second vaccines. I’m doing ok. Lately being getting a lot of abdominal gas pain even using gas x, about the follow up ct . I got it done at end of September. Looked ok just some fluid along suture line inside. Not a lot. They found new mass on inferior of stomach and a lesion on the liver. Had PET dótate scan done on Thursday. Getting results in Monday when I go to the doctors office. I hope is nothing bad.

c2pricorn66 | @c2pricorn66 | Oct 21, 2023

In reply to @milagro45pr "I never got the second vaccines. I’m doing ok. Lately being getting a lot of abdominal..." + (show)

Thanks. I will include you and others in my prayers 🙏 that things will be okay. Hubby had his 2nd vaccines next lot will be in 5 years to prevent serious bacterias due to low immunity post op. So you're still leaking ? just monitor your temp due to
Possible accumulation intra abdo. Keep
In touch.