1. < Neuroendocrine Tumors (NETs)

Anyone out there have PNET experiences and outcomes to share?

Posted by outlawcancer @outlawcancer, Dec 8, 2022

Hello everyone, I am 44 y/o male. About 6 weeks ago I went into the ER for abdominal pain. My initial thought was pancreatitis because I had it exactly 1 year ago when I went in 6 weeks ago. During a CT scan a mass was discovered on tail of my pancreas. Fast forward 4 weeks later, biopsy was done and confirmed as PNET. Saw a surgeon about a week ago and she want to do a distal pancreatectomy and splenectomy. CT with contrast doesn’t show any spread, however waiting on doing a PET scan in 2 weeks to make sure. Also waiting for 3 vaccines to kick in during the 2 week waiting period. I’ve been petrified since learning of this disease. When I first found out I turned pale and almost had to vomit. Anyone out there who has had similar PNET and outcomes? Survival rate etc. greatly appreciate it.

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

Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Dec 13, 2022
In reply to @smt "I was diagnosed with a NET on the head of my pancreas at 42, after 6..." + (show)
@smt

I was diagnosed with a NET on the head of my pancreas at 42, after 6 years of worsening symptoms many visits to the GP, two ER visits a few misdiagnosis. I was shocked and terrified when I was told a CT scan showed a NET on my pancreas. I initially discussed with three surgeons that all thought it should stay in as where it was made the surgery alot more difficult, one even said it would be easier to remove if it was on the tail, I don't know if that is correct or not. I had whipple surgery after seven years of watching it and my primary NET didn't really grow but had two new growths on my liver that were removed at the same time as well. For me I had a lot of improvement in my quality of life after surgery. All previous symptoms were gone after surgery. I am now three years after surgery still feel good, waiting for a PET for a new spot on my liver. I know the surgery for the tail is very different then mine, but I did the wait watch approach and wish I would have had surgery earlier based only on how much better I feel after surgery. I am also hopeful after reading posts from others who have managed for years after a NET diagnosis.

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Hello @smt

I appreciate you sharing your NETs journey on Connect. It sounds as if you have had some good results from your surgery.

I see that you first posted on Connect last month. How did you find this forum? What helped you most in making good treatment decisions?

REPLY
smt | @smt | Dec 14, 2022

Hello Teresa,
I found this form by just searching online for any information that could prepare me for my next appointments as I don't think I have made good treatment decisions in the past. I incorrectly spent 7 years thinking surgery wasn't an option for me. So this time I want to ask more questions. I may need another liver ablation, there is currently differing opinions on the images from recent MRI's, and CT scans. Currently waiting for a Galium PET. I have an appointment coming up to dicuss if a stint is needed in my pancreatic duct. I have had pancreatitis a few times this year. I was so sick for 10 years before my surgery and feel really good now I don't want to go backwards. So I want to make the right decisions. For me reading others experience with different treatments is helpful.

REPLY
kim1965 | @kim1965 | Dec 14, 2022

Outlaw, any questions you may have, Kim and I would love to pass forward the plan and results, in the possible hope it could help or at least give another NET’s patient questions to ask their Cancer Care Team.

REPLY
karla70 | @karla70 | Dec 22, 2022

Hello! My name is Karla and I live in SW MO near Branson. I’m 52 years old and a retired educator. I retired early due to health issues. Coincidentally, in May of this year I had what I call an “episode” …severe abdominal pain coupled with much nausea. Seven years ago I was diagnosed with early menopause (hysterectomy at a young age), IBS, and diabetes. I consider myself an active person (hiking and outdoors, walking, camping,…). I thought perhaps I had Chrohns disease or something as I’d frequently get these. I went to ER in Branson and they discovered a very large mass on pancreas~fearing the worst I was transported to Springfield hospital. It was determined after many scans and biopsy I had a PNET. Unfortunately, it is metastasized to liver (5 large tumors), lymph nodes, skull, neck, spine, hip, and pelvis. I did 3 month of CAPTEM oral chemo, it didn’t show much change and new ones were on each set of ribs,. My quality of life was down and I also have severe anemia. I completed my 2nd round of PRRT and it’s been a bit rougher. I’ll have more bloodwork after Christmas and I’m anxious to have another NETSPOT PET to see if this treatment is shrinking the tumors. My doctors here will not operate. Dr. Liu in CO could….but how do I recover so far away? It would be about $30000 out of pocket as they don’t take Missouri Medicaid. I’m so limited by my insurance and the fact my parents are aging, I live alone, and my sons (and families) are in Air Force and have their lives! I’m doing my best, although the pain levels get fierce. I can tell I’m so much weaker than before. Depending on how my blood counts go I’ll keep going with PRRT. I do have faith and a positive attitude. I move when I can and rest as I can! I’m blessed to have family and friends nearby, but sad there are no experts in my area. It’s a new journey for me too. I’ve learned so much and take one day at a time!

REPLY
1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Dec 22, 2022
In reply to @karla70 "Hello! My name is Karla and I live in SW MO near Branson. I’m 52 years..." + (show)
@karla70

Hello! My name is Karla and I live in SW MO near Branson. I’m 52 years old and a retired educator. I retired early due to health issues. Coincidentally, in May of this year I had what I call an “episode” …severe abdominal pain coupled with much nausea. Seven years ago I was diagnosed with early menopause (hysterectomy at a young age), IBS, and diabetes. I consider myself an active person (hiking and outdoors, walking, camping,…). I thought perhaps I had Chrohns disease or something as I’d frequently get these. I went to ER in Branson and they discovered a very large mass on pancreas~fearing the worst I was transported to Springfield hospital. It was determined after many scans and biopsy I had a PNET. Unfortunately, it is metastasized to liver (5 large tumors), lymph nodes, skull, neck, spine, hip, and pelvis. I did 3 month of CAPTEM oral chemo, it didn’t show much change and new ones were on each set of ribs,. My quality of life was down and I also have severe anemia. I completed my 2nd round of PRRT and it’s been a bit rougher. I’ll have more bloodwork after Christmas and I’m anxious to have another NETSPOT PET to see if this treatment is shrinking the tumors. My doctors here will not operate. Dr. Liu in CO could….but how do I recover so far away? It would be about $30000 out of pocket as they don’t take Missouri Medicaid. I’m so limited by my insurance and the fact my parents are aging, I live alone, and my sons (and families) are in Air Force and have their lives! I’m doing my best, although the pain levels get fierce. I can tell I’m so much weaker than before. Depending on how my blood counts go I’ll keep going with PRRT. I do have faith and a positive attitude. I move when I can and rest as I can! I’m blessed to have family and friends nearby, but sad there are no experts in my area. It’s a new journey for me too. I’ve learned so much and take one day at a time!

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Hello @karla70 and welcome to Mayo Connect. I certainly understand your wanting to see a NET specialist. I'm wondering if there is a university medical center in Missouri where you could have a consultation? These research-oriented facilities might be able to offer you some more treatment options.

Here is some information from the Carcinoid Cancer Foundation website with information for patients, https://www.carcinoid.org/for-patients/. You will see that there is information about insurance appeals and finding specialists.

Have you considered consulting with a university medical center in your state?

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