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JoshK

Crazy question

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I'm definitely not counting on this, but I'm just throwing out a crazy scenario...

As many here may know, my mom was diagnosed with SCLC in Jan with a small primary tumor (2x1cm) and a small-ish brain metastasis (2x2cm). However, so far this cancer has not acted at all like SCLC in a number of ways:

1) My Mom has and has never had any symptoms

2) The tumor is very peripheral, which I understand is unusual for SCLC.

3) The doctors said it appeared to be slow-growing. Because of her brain tumor resection, she went 5 weeks from diagnosis to treatment, and her tumor actually shrank in that time, and one of the lymph nodes they were worried about also went down. She also had various other lung abnormalities (e.g. fluid which they thought was a plural effusion) which also disappeared without treatment.

4) She only had a single metastasis, which was also well-defined, small-ish and peripheral. I understand with SCLC it's more typical to see multiple and brain mets.

5) Prior to the pathology report, pathologists were on-hand for her brain resection, and they looked at the tumor tissue under a microscope. They said they were reasonably sure it was NSCLC by the way the cells looked at the time.

What I'm beginning to wonder is if there is any possibility that there was a mis-diagnosis? I've already come across 2 people on various boards who were mis-diagnosed with SCLC - one actually had NSCLC and another had some other unrelated lung condition.

I don't know if there are any clues here or if this is standard pathology lingo, but here is the exact wording of her pathology report. Is there any room for doubt here, or is this the kind of language they always use?

"Metastatic high-grade neuroendocrine tumor, most consistent with small-cell carcinoma." It then goes on to list a whole bunch of characteristics (e.g. positive for CDX-2, negative for cytokeratin 7, etc.) and says the "immunoprofile is non-specific."

Any thoughts???

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Hi, Josh.  If there is any doubt, a second opinion is definitely warranted.  I've known people who end up getting three opinions because the first two were inconsistent.  Because treatments do vary for SCLC and NSCLC, an accurate diagnosis is key.  

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Josh,

If two pathologist visually looked at the biopsy cells and determined small cell, then I'd call it a pretty definitive determination.

Visual identification of all lung cancer has be the diagnostic standard for, well forever.  Histology of cancer cells is well understood.  There is a possibility of a miss diagnosis but a very low probability.

My form of lung cancer is said to be slow growing.  About a month before my diagnosis, I had a chest x-ray for cracked ribs.  There was no indication of any tumor in my lungs, yet a little more than a month later, I was diagnosed with a tumor in the right main stem bronchus more than 3" long.  I think the rate of growth varies not only with the type of cancer but in people.  

Stay the course.

Tom

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Hi Josh,

I agree with Susan about a second opinion. The words "most consitent with small cell carcinoma" do sound a little weasly.

Bridget O

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I actually just arranged a second opinion after chemo round 4 at MSK. They were also surprised by her medical records as well. Like I said, I'm not counting on this, but at least for now she has a very abnormally-behaving (in a good way) SCLC.

Tom: Yes, SCLC was the pathologists' report. The only oddity I mentioned there though was that when they looked at it under a microscope in the beginning, they said they were reasonably certain in was NSCLC." That's what was so devastating...the diagnosis changed much for the worse. 

Yeah, I just don't anything about pathology..."most consistent" and "non-specific" just sound wiggly, weasly, whatever. However, that may be totally standard pathology report lingo...I just have no idea.

Anyway, for now I just need to count my blessings because I never could have imagined this sort of experience 3 months in. It could all go south very fast with SCLC, but we just need to take it day-by-day, right?

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