Circulating Tumor Cells (CTC) TESTS

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Nordy1
Posts: 30
Joined: Tue Oct 02, 2018 11:45 pm

Circulating Tumor Cells (CTC) TESTS

Postby Nordy1 » Wed Jan 30, 2019 9:36 am

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.....
jan 2018 emergency room via ambulance rectal bleeding event
dx Feb 2018 sigmoid adenocarcinoma 2.5 cm, 3 small extranodal foci resected march 2018
stage 3A T1 n1c
multiple indeterminent nodes in liver, lungs and kidney
11 rounds folfox with oxyplatin stopped with full nephropathy of hands and feet
currently waiting next scan in Feb. 2019

mpbser
Posts: 806
Joined: Wed Apr 19, 2017 11:52 am

Re: Circulating Tumor Cells (CTC) TESTS

Postby mpbser » Wed Jan 30, 2019 11:10 am

I believe they are routinely tested at MD Anderson. I have never heard of them done unless specifically advocated for at other places.
Wife 4/17 Dx age 45
5/17 - Lap left hemi
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
lymph nodes: 9 of 54
8/17 Sub-total colectomy
2nd tumor 5.5 cm T1 N0
CEA: 2.9 to 2.2
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI shows 1 met in liver
Resection & HAI Mar 7

Rock_Robster
Posts: 58
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Circulating Tumor Cells (CTC) TESTS

Postby Rock_Robster » Wed Jan 30, 2019 10:53 pm

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).
Male 37 years; Melbourne, Australia
10/2018 Dx: 3.5 cm rectal adenocarcinoma, 10 cm from verge. Well/mod diff (G1-2), T3bN1bM1a.
3 enlarged local lymph nodes and 4 liver lesions.
Mutation in NRAS (G13R; exon 2, codon 13). MSS; MMR proficient.
11/18 - 6 rounds neoadjuvant FOLFOX
12/18 - DVT, started clexane
3/19 - Liver resection, clear margins
4/19 - Long-course pelvic chemoradiation (25 x 1.8 Gy with Xeloda 3000 mg/day)

Beckster
Posts: 342
Joined: Thu Jan 12, 2017 3:01 pm
Location: New Jersey

Re: Circulating Tumor Cells (CTC) TESTS

Postby Beckster » Thu Jan 31, 2019 6:23 am

Nordy1 wrote: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
57/Female
DX:(CC) 10/19/16
11/4/16- Lap right hemi(cecum)
CEA- Pre Op (1.9), Pre Chemo (2.5)
Type: Adenocarcinoma
Tumor size: 3.5 cm x 2.5 x 0.7 cm
Grade: G3 (surgical) G2 (pre-op)
TNM: T3N0M0/IIA
LN: 0/24
LVI present
Surgical margins: clear
MSS
12/27/2016 - Capeox, anaphylactic reaction to oxaliplatin on first infusion-discontinued
1/2/17 to 6/9/17- Xeloda monotherapy
6/17, 12/17, 6/18, 12/18 CT Scan NED :D
CEA- 6/17- 3.6, 9/17- 2.8 12/17-2.8, 3/18-3.1, 6/18-3.0, 9/18 2.8, 12/18 2.5
Clear Colonoscopy 10/17 :D

mpbser
Posts: 806
Joined: Wed Apr 19, 2017 11:52 am

Re: Circulating Tumor Cells (CTC) TESTS

Postby mpbser » Thu Jan 31, 2019 6:45 am

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.
Wife 4/17 Dx age 45
5/17 - Lap left hemi
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
lymph nodes: 9 of 54
8/17 Sub-total colectomy
2nd tumor 5.5 cm T1 N0
CEA: 2.9 to 2.2
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI shows 1 met in liver
Resection & HAI Mar 7

Nordy1
Posts: 30
Joined: Tue Oct 02, 2018 11:45 pm

Re: Circulating Tumor Cells (CTC) TESTS

Postby Nordy1 » Thu Jan 31, 2019 8:16 am

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.
jan 2018 emergency room via ambulance rectal bleeding event
dx Feb 2018 sigmoid adenocarcinoma 2.5 cm, 3 small extranodal foci resected march 2018
stage 3A T1 n1c
multiple indeterminent nodes in liver, lungs and kidney
11 rounds folfox with oxyplatin stopped with full nephropathy of hands and feet
currently waiting next scan in Feb. 2019

mpbser
Posts: 806
Joined: Wed Apr 19, 2017 11:52 am

Re: Circulating Tumor Cells (CTC) TESTS

Postby mpbser » Thu Jan 31, 2019 8:36 am

Good luck with the scan!
Wife 4/17 Dx age 45
5/17 - Lap left hemi
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
lymph nodes: 9 of 54
8/17 Sub-total colectomy
2nd tumor 5.5 cm T1 N0
CEA: 2.9 to 2.2
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI shows 1 met in liver
Resection & HAI Mar 7

Nordy1
Posts: 30
Joined: Tue Oct 02, 2018 11:45 pm

Re: Circulating Tumor Cells (CTC) TESTS

Postby Nordy1 » Sun Feb 10, 2019 8:17 am

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
jan 2018 emergency room via ambulance rectal bleeding event
dx Feb 2018 sigmoid adenocarcinoma 2.5 cm, 3 small extranodal foci resected march 2018
stage 3A T1 n1c
multiple indeterminent nodes in liver, lungs and kidney
11 rounds folfox with oxyplatin stopped with full nephropathy of hands and feet
currently waiting next scan in Feb. 2019

Cured
Posts: 516
Joined: Thu Nov 27, 2008 10:53 pm
Location: MO

Re: Circulating Tumor Cells (CTC) TESTS

Postby Cured » Sun Feb 10, 2019 2:54 pm

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
5-08:Stage 3 Rectal: 6/14 Nodes
Ace Surgeon Removed 90%Rectum & lots of Colon-Full Incision
Ileo Rev'd @6 Mos.
Radiation+5fu Pre-Surgery
FOLFOX 8 Cycles Done 1-09
Clear Scope 8-17; Clear CEA 2-18
Glory to God! Healed by prayers of many: for 10 years
7-18: tumor pressing against brain. Removed.
Metastatic to lung. CEA 6.9 Began Folfiri
CEA dropped to 4.5 after 1 dose of chemo!
After 8 rounds CEA=3.0,in range
After 3 week break CEA = 1.8
Finished 12 rounds of Folfiri.

Nordy1
Posts: 30
Joined: Tue Oct 02, 2018 11:45 pm

Re: Circulating Tumor Cells (CTC) TESTS

Postby Nordy1 » Mon Feb 11, 2019 7:29 am

""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
jan 2018 emergency room via ambulance rectal bleeding event
dx Feb 2018 sigmoid adenocarcinoma 2.5 cm, 3 small extranodal foci resected march 2018
stage 3A T1 n1c
multiple indeterminent nodes in liver, lungs and kidney
11 rounds folfox with oxyplatin stopped with full nephropathy of hands and feet
currently waiting next scan in Feb. 2019


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