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    • #19188
      Price Wooldridge

      Recently I’ve read several comments on cancer screening, lung nodules, and other concerns after receiving the LEMS diagnosis. The medical papers say LEMS is triggered by cancer in 50-60% of cases. I’ve also read and been told by my neurologist, LEMS patients have better results treating cancer than the general population.

      What is the protocol for cancer screening after diagnosis? I’m going to give you mine, because I think it’s typical. After diagnosis, I was quickly scheduled for a full body CT scan with contrast. I was also scheduled for a PET scan right behind that.

      After these initial screenings, I was scheduled for follow-up chest CT scans every 3 months for a year. After that, we dropped them to every 6 months. Now, I do a CT once a year.
      What has your cancer screening protocol been since your LEMS diagnosis? And do you think it’s been adequate?

    • #19202
      Dorothy Dempsey

      In 2006 I had a chest xray prior to a surgery and a nodule was found on my left lung at that time.  I had CT scans every 3 months for a while, then every 6 months for some time, then every year and since 2012 I have one every 2 years.  The size of the nodule hasn’t changed, at least not up until my last scan in 2020.  So my diagnosis of LEMS wasn’t until 2014 but I had symptoms starting in 2010, weakness, falling, Pitosis of the eye, etc. of LEMS.  It just took many visits to doctors and 4 neurologists to finally nail a diagnosis.  I think now of the rough ride it was but am grateful for some relief with Firdapse!

      • #19207
        Price Wooldridge

        @dordem I think the key takeaway here is the nodule size hasn’t changed. Once they stop growing, they’re of little concern. It’s good to hear you continue to be watchful with periodic CTs.

    • #19203
      Joanne Evans

      After my diagnosis in 2019 I had a CT scan and then a PET scan at the cancer clinic shortly after. Results were negative. I am going to ask for further screening as nothing is booked.

      • #19208
        Price Wooldridge

        @joanneevans yes, I think you should. I’m glad you’re being proactive to get something scheduled. I would think your neurologist would be up on this. If not, they need some education, which you can provide.

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