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    • #16732
      Ashley Gregory

      Good morning all! Happy Wednesday!

      As most of you know, there are two different types of LEMS- One is associated with small cell lung cancer (SCLC) and the other is linked to autoimmune related causes.

      A lot of websites say that “60% of LEMS patients have SCLC,” but I think this percentage is too high. I actually feel that the autoimmune version of LEMS is more common. I think seeing this percentage in writing terrifies a lot of us and may be causing unnecessary stress, especially in the first couple of weeks after our diagnosis.

      I’m wondering how many of you have actually been diagnosed with SCLC (before or after your LEMS diagnosis)?

      How many of you have been diagnosed with any type of cancer?

      Do you think that “60% of LEMS patients” have SCLC is accurate?

      I’m looking forward to hearing what you all think!


    • #16816
      Dawn DeBois

      Hi @ashleygregory757,

      Your question is very interesting about how many patients actually have SCLC near the diagnosis of LEMS. I have met some patients who have had cancer, and know of a couple who have survived small cell lung cancer. Most often, however, the patients with a cancer diagnosis are not the ones who are active on social media seeking answers. They are either very sick with their treatments, or much older than those of us with autoimmune LEMS, and they don’t partake in social media. I have seen various LEMS Facebook pages posts by relatives of the LEMS patient with cancer.

      The one thing I really love about the Forums is that it’s not Social Media. We definitely have a wider range of patients involved than on Facebook platforms. I do hope that the LEMS patients who do have small cell or another form of cancer find this post through the magic of Google some day and join us so that they know they have a community of support!

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