I have been given information about joining the Tracc 3 trial which uses the ctDNA test to potentially de escalate your adjuvant chemo regime, if it is negative. Am undecided though. Have you been offered it via the trial?
I’ve had the ctdna test a few times first post surgery, both were negative. After six rounds of chemo I had the test again and it came back borderline positive. So am nearing completion of another six rounds making 12 in total.
so now oncologist is keen for me to do the test again - but if it shows up positive again what next
My scans are all clear so no evidence of disease
keen to understand if anyone else is experiencing similar to me?
Ah interesting. I hadn't come across this test aside from the trial information. I did wonder though what happened if at the end of treatment it was positive again. Really hoping you will be negative but good to hear other experiences x
I'm on the trial but in the control group (standard treatment), so no idea if I had positive ctDNA or not. I'm over 2 years in, the ctDNA bloods are taken at the same time as my regular CEA bloods so no real extra hardship. I think we've all benefitted from others who took the chance on previous trials, and it's worth giving back. The science is very well founded, and if it does work it will reduce the risks of chemo and also free up valuable NHS resources.
Be aware though that if you are in the control group, it's quite likely your blood will be banked and so there is no way to find out your results.
I felt that being on the trial gave me an extra incentive to complete chemo. Sometimes I feel I might get slightly better attention from being on it, but maybe my MDT team are just awesome anyway.
Hi Hegsuk that's really interesting. I was so undecided but didn't join up in the end. I was just concerned that if I was in the test group and tested negative first, then positive, treatment time is lengthened. I am also feeling really anxious at the moment and was wondering how I would deal with knowing I was ctDNA positive even after chemo (if that were to happen). Not sure I would want to know!
Lots of ifs and I could have ended up in the control group anyway, but ultimately it wasn't for me at the moment.
Good to hear you have a great team! Hope treatment is progressing well.
Thanks Arial88 ! I would be the same as you, before we found out about the banking of the bloods I was tempted to ask for the results, but wasn't sure I really wanted to know. I think dealing with the anxiety is as much as a day-to-day issue as dealing with the treatment (and goes on much longer).
Recovery is going well. No further treatment needed since the 3 months of chemo, CEA levels have been basically zero, I had a scare just before Xmas on the 2 year CT scan, luckily the follow-up MRI was clear. But every time I think back 3 months ago I can see a really good improvement in quality of life.
That's so good to hear! I am just 4 weeks post op, chemo starts March 13th so very much at the start of the next phase of treatment. It just gets a bit overwhelming doesn't it? I was looking at my surveillance plan for the next 5 years and wondering how I would cope with all that pre scan / pre bloods anxiety. But I guess you just have to!
Excellent news re the MRI and the overall improvements, long may it continue!! x
I’m having it tomorrow as part of the CVLP trial. I’ve been told there is only a 10% chance of having a positive test? I understand it can take several weeks for the results to come through.
Ah good luck, be interesting to hear how you get on. My Tracc trial information didn't mention percentages around positives, I guess I assumed I would be positive....... but that's possibly me and my assumptions!
