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

Wishing you all the best, @tinerobison!
I'm looking forward to hearing about your visit. Will you provide an update regarding what you learn about possible treatments going forward?

Hi 👏 from AU. My partner (x army) was going to have his hernia repaired so CT scan was conducted instead a lesion in his pancreatic duct was spotted. No symptoms. He's had UES using Dotate and confirmed slow growing nonfunctional and benign tumour. PET Scan was performed and it's localised. Endocrinologist suggested to do laparoscopic distal pancreactomy and spleenectomy cause it could change its behaviour for the worse. He is schedule on the 6th Sept. i am a Registered Nurse, his partner and his carer. It's frightening, tearful and stressful more so to him due to PTSD. pNET was accidentally found and caught early. We are hopeful. Being here in this forum/blog and talking to people made us realize that there is a bright side in the horizon after turbulence. We have big faith in our surgeons hands most especially to our Almighty. creator. Hoping you and your husband can get an answer soon so they can put a plan in place.

So far we’re at a loss and a little discouraged. Dr here at Mayo said yesterday none of his pain and symptoms have to do with the pnet. He believes it’s nonfunctional and benign. We had a biopsy today we now wait for the results although endoscopist said he had a rough time seeing the tumor. We are relieved he doesn’t have cancer but we we’re really hoping for answers or direction of what his symptoms and pain are coming from.

I'm a little confused. If the doctor is having difficulty finding the tumour, how can he say it's a non functional and benign? Put pressure on them to do the necessary test/scan and hope to get your answer soon.

Based on his 42 years of experience and the appearance of the tumor on the Ct scan, (size 0.7mm) symptoms and he claims these tumors do not cause pain. We have had every scan and blood test done and they are just not showing anything to show this is a functional tumor he stated he positive it’s non functional and not cancerous. We will wait and see what the biopsy shows to see if that changes anything but I am not optimistic…

True ... non functional tumour doesn't have symptoms until it change its behaviour and metastasis. My partners all blood test were all stable and normal. Endocrinologist said, it's a bonus if they find it at early stage. Hang on there and hoping they have an answer the sooner the better. So plan can be organise.

Hi c2pricorn66

I had a similar story, accidentally found a tumor on my pancreas identified as pNET; mine was functional. Long story short: I had a Whipple in March 2019, all went well besides a minor issue that caused me to stay 3 weeks in hospital. The procedure has been demanding on my body, but recovery (at that time age 57, relatively fit) went well. Was back at work in June 2019 and had not suffered any major consequences besides creon with food.

In Dec 2022 during a routine follow-up was diagnosed with NELM. Started in March 2023 with Landerotide monthy 120ml: no side effects and tumor already shrinking.

A diagnosis of Cancer is always scary and mentally dealing with it is difficult. Everybody deals with it differently. My wife suffered a lot while I was positive as soon as I looked at statistics and understood consequences / options (I am a rational guy). My wife told me that my attitude really helped her to get through this difficult period. Based on this statement I believe that it will make a significant difference to all loved ones that are involved / exposed to cancer if one of you can be mentally strong and positive.

I hope this gives both some encouragement and I wish you good luck for the upcoming procedure and recovery.

Peter

Hi @tinerobison

As others have said, hang in there and wait for the biopsy results. If you could, please talk about his symptoms again. For example: where is the pain located, any diarrhea, any difficulties eating, any blood sugar problems, is he losing weight, etc.

His main symptoms are constant discomfort left side of chest/or stomach area especially after eating and movement and activity, diarrhea (but not everyday or in large amounts usually it follows with a flare of pain), belching/indigestion, not sure about sugar problems he has had episodes where I thought his blood sugar dropped so much so that I bought a glucometer but I haven’t been able prove this it only happened less than a handful of times. He has lost weight but it seems to have stabilized, he does go periods of not eating because he is afraid to eat because of the pain/symptoms that follows after eating. He has labile blood pressure it’s normally up when he has a flare. He now says the pain he has from the biopsy is at the exact spot where his normal pain is.. but they are insistent that this tumor this small does not cause pain. We will see what the biopsy shows. Hoping for some answers but I am not optimistic.

Thank you so much Peter. This tested individual's fortitude. My partner has accepted it and there's nothing we can do about it - just to get that thing out and look forward to positive recovery. It is hard to see your love ones go through that mix feeling of emotions. I'm trying to be brave now and more supportive. Thank you for sharing your journey, it helps us to stay positive and @Mayo forum. 🙏
Lina