Hi, I have had results back from a PET/CT scan. There was some uptake centrally, but noted to be possible infection. I am worried about lung cancer as I am an ex-smoker. I have felt unwell for 20 months now. I was hoping that the timeframe would put sclc out of the question as I now know it to be very aggressive and would expect something significant to show on the scan. However, I also have some autonomic neuropathy and know that there is some relationship with sclc and neuropathy called paraneoplastic syndromes. Apparently the neuropathy can show years before any visible tumor. So the scan hasn't really put my mind at rest. Is it true that these syndromes can show years before the tumor and if so is there anyway of confirming a diagnosis and starting treatment? My doctor has suggested we could scan again in 6 months but I was wondering if there were any other options? From reading material by Dr Sanborn, I understand that sclc is not a disease that sneaks up on you over the course of a year, so having been ill for nearly 2 years I feel I can just about rule sclc out, then I read about some of the neuropathy syndromes bubbling along for years prior to diagnosis and I am now a confused cookie. Any clarification or suggestions for any tests that are used in confirming/ruling out disease would be very helpful. I feel that I am at the end of the line and almost resigned to wait and see what happens.
Many thanks to you all
Jim
PET-CT Uptake - 1289120
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Reply # - November 7, 2016, 04:43 PM
Hi Jim,
Hi Jim,
It would be rare for an oncologist to recommend anti-cancer treatment without a diagnosis or strong evidence of a cancerous growth. Although a paraneoplastic syndrome can precede a diagnosis of SCLC, it's not a given. In the absence of measurable disease, it would be impossible to judge the efficacy of treatment, or decide when to stop that treatment. In addition, cancer treatments are difficult and not without risk, a lot to endure if not necessary.
There are liquid biopsies, in which a sample of blood (for example) is analyzed to look for evidence of circulating tumor cells, but that technology is not mature enough at this point to serve as a reliable method of making or (especially) excluding a lung cancer diagnosis.
At this point, watching and waiting is the standard of care, as difficult as that concept is for many patients. But you are correct when you say that SCLC does not usually move slowly, making it less likely in your case.
JimC
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Reply # - November 8, 2016, 08:19 AM
Thank You Jim, I will keep
Thank You Jim, I will keep watching. Do you know if there is any precedence set for when I can stop worrying. As I say, the 20 months elapsed time between symptoms and fairly normal PET scan gives me some hope. I noticed in another post Dr West and Dr Goodgame both spoke about how a lung cancer would normally be easy to find after 2 years or so of symptoms (I think, I just cannot find the posting now!)So wondered if I should draw the line at the 24 month point and just get on with living.
Many Thanks to you all
Jim
Reply # - November 8, 2016, 12:23 PM
The mentally healthiest of
The mentally healthiest of people with cancer would tell you to get on with the business of living whether or not you have cancer. So yes I hope you can get on with living your life. I'm not sure from where the info comes that you may have lung cancer without any proof but I'd say now is the time to assume you don't have lung cancer. The only time I've heard of someone having lung cancer without a nodule showing up on a CT or pet scan is cancer being found in a pleural effusion.
Best of luck,
Janine
Reply # - November 9, 2016, 05:49 AM
Thank you for the information
Thank you for the information Janine, very well put! The only proof I have is from talks with my doctor who has talked about a lot of hypothetical cases, and he admits he has not come across this before, and also from reading up information on the Antibodies Hu,. I don't really understand either, so thank you for sharing what you know in the real world.
Many thanks to you and Jim C
Jim