Could CFS be paraneoplastic?

[Jimbaxter]

Hi,
I read some great threads that alerted me to paraneoplastic syndromes. A question I have for anyone, are the syndromes related to gastro intestinal disturbance (thinking more rapid passage through digestive system) related to an autoimmune response or to hormonal release from a tumour that could be visualised? Or could it indeed be either?

I have had gastro disturbance for 3 years and the dreaded fatigue. Some vitamins are low but being supplemented but I suspect some form of malabsorption showing in vitamin deficiency and fatigue. PET/CT in Oct was clear, but reading these posts made me aware of paraneoplastic syndromes where the tumour cannot be visualised. Any thoughts on this fascinating subject? Thanks to this forum I now realise the doc ran a standard paraneoplastic panel which turned up a blank.
Jim

 

[Jimbaxter]

http://forums.phoenixrising.me/index.php?members/11588/ @Jonathan Edwards I am guessing that there are a huge number of antibodies that relate to small cell lung cancer that have not been discovered yet. Is it true that small cell lung cancer can develop without being seen on CT scans or PET scans for five years.

 

[tiredowl]

I am curious to learn more about this, how long one can live with this syndrome before the cancer or tumor (sometimes benign) is discovered.
And I also read that some people think it could be underdiagnosed?
Should people with extreme ME fatigue and also strange neurological symptoms be on the alert for this?

 

[Gingergrrl]

I am guessing that there are a huge number of antibodies that relate to small cell lung cancer that have not been discovered yet. Is it true that small cell lung cancer can develop without being seen on CT scans or PET scans for five years.

Somehow I totally missed this thread back in 2017 (until you just revived it @tiredowl). I don't know if @Jimbaxter is still posting but if you are... I am curious where you heard that there is a huge number of autoantibodies that relate to small cell lung cancer that have not been discovered yet? The two that I know of are the N-type and P/Q type Calcium Channel autoantibodies.

And yes, there are some doctors who feel that you should have lung cat scans for five years (if you have the calcium channel paraneoplastic autoantibodies) to check for cancer. I did the lung cat scan for three years and it was completely negative so my doctor was confident that the autoantibodies were due to autoimmunity and not cancer. But I have moments where this is still in the back of my mind

I am curious to learn more about this, how long one can live with this syndrome before the cancer or tumor (sometimes benign) is discovered.

It would depend if the autoantibodies were indeed due to a hidden cancer (vs. autoimmunity) and the type of cancer. Small Cell Lung Cancer is fast and aggressive which is why my doctor does not think there is any chance that I have it so many years later. But there are many types of paraneoplastic autoantibodies and syndromes that correlate with other types of cancer. For example, the NMDA autoantibodies and brain related symptoms often correlate with ovarian tumors

And I also read that some people think it could be underdiagnosed?

I think it is underdiagnosed b/c most doctors are not checking for paraneoplastic autoantibodies in the first place.

Should people with extreme ME fatigue and also strange neurological symptoms be on the alert for this?

My own personal opinion is if someone has strange Neuro symptoms they should check for the autoantibodies and if the autoantibodies are positive (like in my case), then they should check for cancer.