Whole Body PET Scan

[crypt0cu1t]

How many of you have had a full body PET Scan to rule out any malignancies?

My antibodies are correlated with Small cell lung cancer & thymoma a lot of the time, so I'm debating paying out of pocket to get one done.

Does anyone have any experience with this?

 

[leokitten]

How old are you? Are you a smoker? SCLC almost never occurs in non-smokers. Age is also very prognostic of cancer risk and if it’s worth bothering with something like a full body PET.

 

[leokitten]

I see you are 26 yo it’s very rare to have any kind of cancer at such an age, so not sure going that Dx route is worth the hassle.

 

[Gingergrrl]

How old are you? Are you a smoker? SCLC almost never occurs in non-smokers.

SCLC does occur with certain paraneoplastic autoantibodies, in particular the N-type Calcium Channel autoantibody which I have. My ME/CFS specialist had me do lung cat scans for three years in a row for this reason. @crypt0cu1t has several autoantibodies that can correlate with paraneoplastic syndromes and cancer (or they can be purely autoimmune and cancer will never be found). In my case, my illness turned out to be purely autoimmune and no cancer was found. But you cannot know (with certain auto-antibodies) without checking.

 

[leokitten]

SCLC does occur with certain paraneoplastic autoantibodies, in particular the N-type Calcium Channel autoantibody which I have. My ME/CFS specialist had me do lung cat scans for three years in a row for this reason. @crypt0cu1t has several autoantibodies that can correlate with paraneoplastic syndromes and cancer (or they can be purely autoimmune and cancer will never be found). In my case, my illness turned out to be purely autoimmune and no cancer was found. But you cannot know (with certain auto-antibodies) without checking.

But what is the added value of whole body PET in this situation? Instead of a lung PET?

 

[Gingergrrl]

But what is the added value of whole body PET in this situation? Instead of a lung PET?

I don't know if there is an added value of the whole body PET scan in @crypt0cu1t case without knowing all of the different autoantibodies that he is positive for. I know that he has confirmed autoimmune encephalitis but I do not recall the other autoantibodies that he has tested positive for.

Each paraneoplastic autoantibody correlates with different types of cancer. I was trying to clarify (re: your post) that in the case of paraneoplastic autoantibodies (also called neuronal autoantibodies), that you can have small cell lung cancer even at a young age and as a non-smoker.

I have a chart (either from Mayo or Quest, I can't remember off the top of my head) that lists all of the paraneoplastic autoantibodies and the types of cancer that they can correlate with. I have posted it on PR in the past and can try to find it again if it is helpful for anyone.

Some doctors prefer the whole body PET scan if there are several types of cancers to be ruled out. Or if a specific scan (like a lung cat scan) showed something suspicious and they wanted additional info. In my case, my main doctor (and the Neuros that I saw in 2016) only wanted me to have yearly lung cat scans and not a full body PET scan. But I know other people who have done the PET scan.

 

[kangaSue]

My antibodies are correlated with Small cell lung cancer & thymoma a lot of the time, so I'm debating paying out of pocket to get one done.

How long have you had the antibodies showing up for? The chances of it being a malignancy (paraneoplastic syndrome) are greatly reduced if it's been 18 months or more so a simple chest x-ray may suffice as a screening measure.

How old are you? Are you a smoker? SCLC almost never occurs in non-smokers.

SLSC or breast cancer are the two most common malignacies eventually found from having these antibodies but they can cause just about any sort of cancer, including non-small cell lung cancer.

 

[starlily88]

How many of you have had a full body PET Scan to rule out any malignancies?

My antibodies are correlated with Small cell lung cancer & thymoma a lot of the time, so I'm debating paying out of pocket to get one done.
Does anyone have any experience with this?

 

[starlily88]

Not sure what you mean - I was told to do PET scan - (didn't) but the PET included doing an iodine isotope and barium to light up "cancer" spots in whole body, lungs, stomach, etc. No one called it a whole body PET scan.
Bad thing is - a lot of false positives, and it sometimes lights up lymph nodes that upon Lung bronchoscopies don't show that this lit up lymph node does have cancer (after tissue sample).

Never heard of Thymoma - but Small Cell Lung Cancer (SCLC) best seen by a CT chest scan - which is all of 5 minutes - and just your head/chest in the CT scan - it's very fast, and read under 24 hrs. This is the gold standard for SCLC.

Can you explain to me what exact "antibodies" are correlated to to Small cell lung cancer?
I find that interesting - no thoracic surgeon told me this nor tested for this, so like to pass it on.
Starlily99

 

[starlily88]

How many of you have had a full body PET Scan to rule out any malignancies?

My antibodies are correlated with Small cell lung cancer & thymoma a lot of the time, so I'm debating paying out of pocket to get one done.

Does anyone have any experience with this?

 

[starlily88]

How long have you had the antibodies showing up for? The chances of it being a malignancy (paraneoplastic syndrome) are greatly reduced if it's been 18 months or more so a simple chest x-ray may suffice as a screening measure.


SLSC or breast cancer are the two most common malignacies eventually found from having these antibodies but they can cause just about any sort of cancer, including non-small cell lung cancer.

 

[starlily88]

A simple chest x-ray most of times will NOT show lung cancer - sometimes shows a black spot which most see as scar tissue or a fungus. The standard to show any lung cancer in the States in the CT chest Scan.

 

[Alvin2]

With is the difference between a PET and CAT scan?

 

[Pyrrhus]

With is the difference between a PET and CAT scan?

A CAT scan (or CT scan) is a three dimensional X-ray image.

A PET scan is where you are injected with a minutely radioactive "tracer", and then they produce a three dimensional image based on where the tracer bound to its target. Different tracers can bind different targets in order to test for different things.

Despite the terminology, a CAT is not a type of PET.

 

[Alvin2]

A CAT scan (or CT scan) is a three dimensional X-ray image.

A PET scan is where you are injected with a minutely radioactive "tracer", and then they produce a three dimensional image based on where the tracer bound to its target. Different tracers can bind different targets in order to test for different things.

Interesting, it would be interesting to know what each one specializes in (a long list i suspect).
Also there is full body MRI, would be interesting to compare as well.

Despite the terminology, a CAT is not a type of PET.

How disappointing

 

[kangaSue]

Can you explain to me what exact "antibodies" are correlated to to Small cell lung cancer?
I find that interesting - no thoracic surgeon told me this nor tested for this, so like to pass it on.

Any antibody that can contribute to a paraneoplastic syndrome. Mayo's PAVAL panel is the most comprehensive blood test panel for these;
https://www.researchgate.net/figure/Recognized-paraneoplastic-antibodies_tbl2_49704557

 

[Gingergrrl]

Any antibody that can contribute to a paraneoplastic syndrome. Mayo's PAVAL panel is the most comprehensive blood test panel for these;
https://www.researchgate.net/figure/Recognized-paraneoplastic-antibodies_tbl2_49704557

That is a great link and I had not seen it before.