Circulating Tumor Cells (CTC) TESTS

[Nordy1]

Hello everyone
I've just finished my chemo in November and had a clean scan, except that 3 or 4 small unknown spots had disappeared or shrunk through chemo. It leaves a big question mark regarding if they were mets or not. I have another scan in 2 weeks and some blood work on for tomorrow and I wanted to ask everybody here if they regularly have the CTC (circulating tumor cell) test done? Is it standard for some treatment centers?

I feel that because I have the big question mark over my head regarding the disappearing spots that CTC might be a good indicator. My CEA has never been higher then 3.5 even right after surgery so not a good indicator, and CRP is sitting steady at 6.
Have any of you had independent CTC testing done?
I know from reading here I'm hardly alone in my fear of the uncertain, and that nothing is black and white, sometimes I feel like a formal pronouncement of yes it has progressed to stage 4 would be preferable to the cloud of doubt - the "we just wait and see" attitude. At least I would have a plan then.....

[mpbser]

I believe they are routinely tested at MD Anderson. I have never heard of them done unless specifically advocated for at other places.

[Rock_Robster]

Hi Nordy, this may not be much help as I’m based in Australia, but my oncologist also leads a lot of research here into CTC (or ctDNA as it’s often referred to here). He said it would be worth me getting testing once I’m at the point you are - post surgery, etc. It’s not standard of care here yet by far but it can be done - I’m not sure about insurance or costs as I haven’t asked yet. Regardless I’ll be pushing for it when the time comes. I see him next week and if there’s anything you’d like me to ask, just let me know (I’d be interested too).

[Beckster]

Hello everyone
I've just finished my chemo in November and had a clean scan, except that 3 or 4 small unknown spots had disappeared or shrunk through chemo. It leaves a big question mark regarding if they were mets or not. I have another scan in 2 weeks and some blood work on for tomorrow and I wanted to ask everybody here if they regularly have the CTC (circulating tumor cell) test done? Is it standard for some treatment centers?

I feel that because I have the big question mark over my head regarding the disappearing spots that CTC might be a good indicator. My CEA has never been higher then 3.5 even right after surgery so not a good indicator, and CRP is sitting steady at 6.
Have any of you had independent CTC testing done?
I know from reading here I'm hardly alone in my fear of the uncertain, and that nothing is black and white, sometimes I feel like a formal pronouncement of yes it has progressed to stage 4 would be preferable to the cloud of doubt - the "we just wait and see" attitude. At least I would have a plan then.....

I spoke to my onc about the CTC test. I go to an MD Anderson facility in NJ and I am a participate in the NOVA study (CTC clinical research), which is being conducted in Australia. He does not do CTC testing on me, but through the study, I was tested even though I will never know the results. When I questioned him about Colvera (a test for CTC), he said that it is not ready and more research needs to be done. My CTC testing had to be done when I was at the 2 year mark.... they also had to send in a CT scan.

Beckster

[mpbser]

Interesting anecdote about MD Anderson and CTC testing. I had assumed it was routine and done at any time because Greg (Nene's husband) on Real Housewives of Atlanta was shown on one episode this season getting a phone call from MD Anderson informing him that his bloodwork showed CTCs in his system. They very strongly advised chemotherapy. From what I can tell, he had been diagnosed shortly before having colon surgery, is Stage III, and this phone call with MD Anderson was not long after the surgery.

[Nordy1]

Hello everyone
Thank you for the responses, they are truly appreciated. Now I know its possible so I will ask today when I go for blood work. They have been receptive to me in the past when I've asked for particular tests but for some reason I always feel like pin in the ass when I do it... But I do it anyway. I always tell them if its impossible I will look at doing it privately if I can find out here to go but I'd rather keep everything under my primary oncologist.

Only 12 more days till my next scan! Im sure this must get easier as time goes on (fingers crossed) but right now it feels like I'm living in blocks of time, prescan week - results waiting week- then relatively calm weeks until the next prescan week.
That sounds like complaining, and I guess it is but Im really just trying to share, generally I'm very positive and grateful that the cancer was caught when it was and that I still have a good life.
Thanks again everyone, I find this column very helpful.

[mpbser]

Good luck with the scan!

[Nordy1]

Just an update

My onc said the CTC tests weren't approved here (Canada) and didn't think they were where they needed to be yet for reliability. I'm looking further into it and checking privately now. Also an update on my ultrasound, which showed clearly all nodes are still there but could not help distinguish what they are. Back to another CT on Friday. After that I don't know what the next step is...

Thanks again

Nordy

[Cured]

I asked my Onc about this test this week. He said it isn’t ready yet and likely would be a DNA CTC test when it is. This is interesting if they can with precision see what is going on inside of us. In my case we are baffled how the Rectal cancer could appear metastatic 10 years later.

Best wishes

[Nordy1]

""asked my Onc about this test this week. He said it isn’t ready yet and likely would be a DNA CTC test when it is. This is interesting if they can with precision see what is going on inside of us. In my case we are baffled how the Rectal cancer could appear metastatic 10 years later.""

Thanks Cured

Im thinking this must be the ctDNA I reading and wondering about, unfortunate for us that its not ready.It sounds like a major breakthrough for early diagnosis and progression.
In your case - I'm so sorry to hear this - 10 Years! Where has it been hiding for 10 years.. It just reinforces the need for the concept of the easy blood test for mainstream routine testing. The LOC chip is another interesting concept too but looks like it may take a few years yet.

Im in for another CT scan tomorrow and hoping for some clearer answers.

Take care,
Nordy1