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