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PNET on tail of pancreas with numerous bilobar hepatic metastases
After eight years (yes, eight years/ ten doctors) of chasing ULQ abdominal and back pain, I recently received a diagnosis of an ill-defined, well differentiated, low-grade 3.1 cm neuroendocrine pancreatic tail mass with multiple (20+) sub centimeter liver metastases. I am totally in shock as I have been treated for years for every imaginable ailment you could imagine. Perfect blood results, just a healthy, active 67 yr. old woman with chronic intermittent back and abdominal pain. Several splenic arterial aneurysms (1 large partially thrombosed and 3 small calcified)) were discovered four years ago and coiled. Removing the spleen not suggested at the time. Although I had high hopes, the aneurysms seemed to not be the source of the pain and indeed the pain continued and actually became worse and more frequent. The metallic coils in my spleen obscure that region of the hilum in all scans plus the large amount of necrotic spleen and lymph nodes in that area only added to my anxiety but I was reassured this was normal after an aneurysm. We continued going down rabbit trails chasing IBS, splenic flexure syndrome and even slipping rib syndrome.
Now my diagnosis is that I've probably had this PNET for YEARS, but we are going to watch and wait and see how fast it's growing. I have been told surgery is not an option - I believe due to the metastases in the liver I have recently started octreotide bi-weekly in hopes it will help control any further progression and possibly reduce the tumor. Abdominal pain and swelling with never-ending dull back pain are really my only symptoms. I have been offered nerve blocks.
I'm at my wit's end because, of course, I now trust no one- including myself- to make the best decision for my future care. I am under the care of a NET specialist however it seems there are many different approaches and since I'm totally distrustful from past experience, does anyone have experience with obtaining second and third opinions? Has anyone changed doctors/standard of care after seeing a second specialist?
The more I educate myself, the more confused I become. Any suggestions?
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donnarushing55 I am glad you have an option for a trial. With NETS it seems everyone is different. In my case, the surgeon made the call to remove the one tumor on the head and take the tumor and remaining tail. At that point, I was and by the grace of God, a stage one, and currently as well! I am sorry you can’t actually meet Dr Starr in person, but you’re on the right path. Wishing you all the best! 💜🙏
Hi @donnarushing55
I’m sorry you’re going through this. Even if you were comfortable with a specialists plan, second opinions are always a good idea, especially if surgery has been ruled out by one. Many net surgeons will do a debulking surgery (depending, of course, on many factors about your own personal case)
As an example, a well regarded specialist dismissed every known treatment for my husband and told him to get his affairs in order. He had already had his pnet tumor removed surgically but had a huge tumor burden in liver with a couple of lymph nodes also involved, but nowhere else. We were fortunate in that we had educated ourselves to such a degree that we knew there were viable options that she would not consider. We sought a second opinion and now 16 years later, my husband has very little disease left.
Because you feel distrustful it’s even more important to educate yourself as much as possible.
@hopeful33250 has provided some excellent resources to help with that.
Best of luck to you
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2 ReactionsI will be having another MRI 2/29/24. My last one was Feb 2023. I have multiple cyst on my pancreas and liver. The one on my pancreas is only 1.6 cm. I feel I should go to MD Anderson and find a Dr who will do a biopsy. I'm afraid to just keep watching and not knowing.
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1 ReactionHi @lindabees ,
Thanks for your encouraging story. What did the second doctor do to erase the “heavy tumor burden” in your husband’s liver and lymph nodes? To be nearly disease free and have a 16-year survival is so miraculous. You give us all hope. Bless you
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2 ReactionsHi @donnarushing55
He had a distal pancreatectomy in 2008 during which they discovered the many liver mets. The surgeon didn’t attempt to debulk the liver but removed the primary on the pancreas. We did the watch and wait and then a brief stint on the early, low dose captem trials. Then he had radioembolization to the liver mets which wiped out nearly all of them. Then in late 2022, he had some progression so he started on full dose captem which shrunk the remainder liver tumors by about 50% and he’s now stable. (He was lanreotide during this whole time and did 3 years on Afinitor when a lymph node grew) His specialist has now taken him off the temodor in order to prevent any long term platelet damage but is keeping him on cap.
I hope your second opinion goes well!
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3 ReactionsDoes long-term Lanreotide 120g monthly injections due any harm to patient or does it continue to reduce/stop Serotonin spread of NET? I received Somatuline Depot monthly injections for 12 months after diagnosis and recently am receiving Lanreotide 28 day injections. I feel cautious about harm from continued injections. Please advise.
I am glad that you are seeking another opinion. Yes I too have felt overwhelmed by the information out there and what is the best treatment. I have been fortunate to have a net specialist in Austin who was able to remove my net in the tail of my pancreas and my spleen. I’m only 8 months post surgery and having new pains so now onto scans and bloodwork to make sure all is still stable. You are in my thoughts and prayers. I have found this support group to be a huge blessing and comfort. I hope you do as well.
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3 ReactionsHello, Michelle! Good luck on your scans! I am approaching my surgery's first anniversary. Have been on Lanreotide/Somatuline injections every 4 weeks and CT scans every 3 months. So far my disease seems stable.
Sorry to hear about your pains :(! Have you been on oany therapy post surgery?
Wishing you well and positivity! God bless! You will beat this! 💜🦓Pavlina
Happy anniversary I am glad that you are stable 💜💜
So far I have not been on any post surgical medications. I have had several bouts of pains and the area of my incision bulges out and we are hoping as the muscles strengthen that will get better too.
I’ll keep you in my prayers
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1 ReactionLet's hope that was it! Let us know the results of your scans! God be with you!💜🦓
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