Replies to Hi I was also diagnosed with a 3.5cm NET tumor in my right lung 18 months...

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Neuroendocrine Tumors (NETs) | Last Active: 6 hours ago | Replies (6)

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@lindanet2024

Hi
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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Replies to "Hi I was also diagnosed with a 3.5cm NET tumor in my right lung 18 months..."

maeve115 | @maeve115 | 6 hours ago

@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Here is an explanation of the old use of the term "Cancer like" which is outdated since it is a real malignancy.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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