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Hello everyone,
About four months ago, I was diagnosed with a 1.5 cm neuroendocrine tumor in the head of my pancreas. I had a PET/CT scan, which is how the tumor was diagnosed. For now, my doctors have decided to monitor it rather than treat it. I will have an MRI or CT scan every six months. They explained that, in some people, this type of tumor can remain stable for many years without growing or spreading, so they don’t recommend surgery or any other treatment at this point.
I did not have a biopsy. The only tests I had were blood tests, a urine test, and the PET/CT scan, based on which they decided on this management plan.
My question is whether anyone else has had a similar experience. Has anyone else been advised to simply monitor a neuroendocrine tumor like this? What are your experiences and opinions? I would really appreciate hearing from anyone who has gone through something similar.
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Basically … I had the same experience except nobody seemed to know what to do when a CT scan randomly reported a “possible” NET. It was an incidental finding unrelated to why the CT scan was done. Lots of labs were ordered which came back with high hormone levels. Multiple referrals were sent but I saw a NET surgeon first who encouraged surgery. I balked at surgery so I saw a NET specialist next. Now I get a Lanreotide injections until I decide to do surgery.
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4 ReactionsMichaela
It is often hard facing the confusing information about NETs. I needed a second opinion so I found I needed to find a NET specialist who worked with a tumor board to help unravel the situation. My first oncologist did not do a Gallium Dotatate test . I received other tests but not the one that lit up showing the situation more clearly.
Waiting is sometimes rightfully suggested, but I required added peace of mind and I am so grateful I got a reliable second opinion and found additional information and assistance. Hopefully, you find added treatment or reassurance that wait and see is the best for you at this point.
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4 Reactions@michaela258 I agree with @maeve115. Are any of your doctors a NET specialist? I too get the gallium dotatate contrast in my scans to monitor my NETs. I also had a biopsy to determine how fast my cancer is growing. I believe both are critical in determining your next steps.
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4 ReactionsHi
I was also diagnosed with a 3.5cm NET tumor in my right lung 18 months ago. I was sent immediately for xrays, then scan, blood tests, etc. Finally sent to have a PET scan one day and Dototate scan the next. From there, I had a biopsy which indicated malignancy but was told it was a carcinoid tumor (cancer-like) which still confuses me. I've been put on an Octreotide injection every month with a CT scan every three months. The tumor has grown slightly, and the treatment is to monitor its growth and continue the injections. I was told there is no cure; just monitor its growth. So far, so good.
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1 ReactionDear Michaela,
Like others reporting here, My Pulmonologist sent me for Xrays and PetScan of my chest as I have COPD and he is worried about lung Cancer. Those tests found a 16 cm Tumor on the tail of my Pancreas on Oct. 5, 2023.
Having a good friend pass away with Pancreatic Cancer this scared the hell out of me, so I saw two different useless Oncologists before I saw a Transplant Surgeon who insisted I have a Biopsy as the only positive way of determining if it was malignant. Sadly the Biopsy was botched and had no results so we decided after six months that I was still alive, with no symptoms, that it was likely a PNET and we would simply watch it. Tests at six months and 18 months showed no growth. Another PET Scan at 30 months showed no growth, but did show a new second tumor that was missed a year ago, and this tumor has grown from 5 cm a year ago, to 13 cm today.
I am scheduled for a new biopsy on the new tumor later this month. My Point is that it is the luck of the draw with PNET's so make sure you get a biopsy as that is the only positive way to know what you have.
Good luck to you! Regards, Rick
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2 Reactions@lindanet2024
Here is an explanation of the old use of the term "Cancer like" which is outdated since it is a real malignancy. I have never heard a NET Specialist still use cancer like. Is the Doctor a NET Specialist working with a tumor board?
" ... Medical organizations have officially moved away from using the term "carcinoid". The World Health Organization (WHO) and major cancer societies now classify these growths as neuroendocrine tumors (NETs). ... The medical community's understanding of how these tumors behave has completely evolved.
The Evolution of the Term The Old Definition ("Carcinoid"): In 1907, a pathologist coined the German word karzinoide (meaning "carcinoma-like" or "cancer-like"). At the time, doctors mistakenly believed these tumors were benign because they grew so slowly.
The Modern Reality (Neuroendocrine Tumor): We now know that these are true, malignant cancers that originate in hormone-producing neuroendocrine cells. Even though they are often very slow-growing (indolent), they have the potential to spread, which is why the old "cancer-like" description is considered misleading and obsolete.
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