Tagged: Cancer, cancer screening, CT Scan, Lambert- Eaton Myasthenic Syndrome, LEMS, LEMS diagnosis, PET scan, Small Cell Lung Cancer, treatment
- This topic has 4 replies, 3 voices, and was last updated 8 months, 2 weeks ago by
Price Wooldridge.
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November 29, 2021 at 7:00 am #19188
Price Wooldridge
ModeratorRecently 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? -
November 30, 2021 at 2:54 pm #19202
Dorothy Dempsey
ParticipantIn 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!
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December 1, 2021 at 9:16 am #19207
Price Wooldridge
Moderator@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.
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This reply was modified 8 months, 2 weeks ago by
Price Wooldridge.
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This reply was modified 8 months, 2 weeks ago by
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November 30, 2021 at 10:02 pm #19203
Joanne Evans
ParticipantAfter 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.
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December 1, 2021 at 9:18 am #19208
Price Wooldridge
Moderator@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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