CTC circulating tumor cell test - do people do this?

[FlowerRose]

I know we regularly check our tumor markers via CA 125 test, but an integrative onc recently told me I should ask for a CTC (Circulating Tumor Cell) test to see if I'm truly NED. I'd never heard of this and asked why don't we get these regularly while we're under a doc's care and she replied, "Sometimes the doctors just don't want to know," which seemed a super weird thing for her to say. Has anyone gotten this blood test? Does your onc recommended them? What does anyone know about them? Thanks, everyone!

[Realistic]

Hi Flower Rose, This is very interesting especially if it can detect if we really are NED always a worry to us all. Going to see if l can find anything on it, this is what this forum good at all letting one another know this kind of information .Thank you so much for sharing this information

Lets hope we can possibly get this test if its available. Sending love & hugs SheilaFxxx

[dolphinsurfer in reply to Realistic]

Please ask your oncologist team.

[Realistic in reply to dolphinsurfer]

Thank you dolphin surfer l will do anything that helps us all is gratefully receivedSheilaFxx

[organicinna in reply to dolphinsurfer]

But what if they going to say " Yes guys, all of you never never NED and its just laying there doormat till it strikes " Will we wont to hear that? Or what will we do if they not checking means they can not help and can not give anything for that ? My only hope and dream is that this shit will allow me to survive for 15-20 years like some people I actually know personally who survived that long and not exactly on yearly stages......Not only survived but having good life? had a good life.....

[bamboo89 in reply to organicinna]

I'm with you on this - unless such a test, if it reveals circulating tumour cells, means there's some kind of immediate treatment that can be offered to get rid of them (and I'm guessing there isn't) what's the point in knowing? If you;re ever lucky enough to be told NED without that test, at least you can relax during the time you are NED, whereas knowing there's circulating cells surely just means you're anxiously waiting for it to recur, knowing for sure it will...

Miriam

[Lovedogs41]

Hi I don’t believe this is something the nhs will do and is something you need to pay privately for.It gives you a result as a percentage amount,how many circulating tumour cells you have in your body.Definitely worth doing in my opinion.

[Realistic in reply to Lovedogs41]

Thanks Lovedogs, FlowerRose has given us all l think something to hope for. Its a shame like everything it comes down to money. The more information we can find the better. But l think your right probably not funded by the NHS heres hoping. Sending love & hugs to you all xxx

[organicinna in reply to Lovedogs41]

If you would know how it will help you personaly ? Just curious if you share pls ))

[FlowerRose in reply to organicinna]

That's a good question. Hmmm... I guess once I'm done with my maintenance treatment (which I will be in May 2022) I feel like I'm going to be thrown to the sharks and am a little afraid of the possibility that this monster was kept at bay these two years solely because of the meds/treatment I'm on (olaparib plus avastin plus Care Oncology Center protocol). Once I'm done, I'm sure I'll feel very on my own. I figured if I know how "much" cancer was still floating around with a CTC test, I'd at least know how much to worry or not worry...? Not a very logical thought process, but.

[Guilane]

Thanks for this FlowerRose. I had to fight to get Avastin/Olaparib straight after my chemo and now it’s starting to be offered routinely. Always grateful for anything that can help. X

[RoseMS in reply to Guilane]

Hi Guilane. Can I ask please when you completed your chemo and started the Olaparib/Avastin? I missed the combo and just on Olaparib but doing well. And, were you on Avastin with chemo? I always wondered if you had to have Avastin with the chemo in order to have it as maintenance also. Onc’s could never give me a direct answer! Thankyou x

[Guilane in reply to RoseMS]

Hi RoseMSI had my first Avastin alongside my last chemo, carried on the Avastin infusion every three weeks, found out I was HRD positive and then started the Olaparib just in time with my fourth session of Avastin. It was all a rush and a fight to get it within the time frame. The original treatment plan had been, finish chemo, have Avastin for a year and then move on to Olaparib. Apparently it’s still not conclusive which is best. Fingers crossed for both of us. X

[RoseMS in reply to Guilane]

Hello Guilane, when did you complete the chemo? I finished May 2020, Olaparib from July 2020. I had asked for Avastin from the start but denied and never really knew why, but i knew it had worked well for a friend. I was diagnosed HGSOC 3c. Am based in London. X

[Guilane in reply to RoseMS]

Hi again, I’m HGSOC 1V, also in chest and neck. Too much spread for surgery. I completed my last chemo on 1st Sept 2021.

[RoseMS in reply to Guilane]

Well, my understanding is avastin + olaparib is the absolute best and latest treatment. My best wishes to you from London x

[Guilane in reply to RoseMS]

My best wishes to you too RoseMS and everyone out there, reading, googling and trying to be proactive in getting whatever there is on offer at the time to help try to win the battle. Onwards and upwards. X

[organicinna]

"Sometimes doctor doesn't won to know" )))) Sound like doctors like our children worries so much about us and can not face the fact is NED is still present and pushing out of their mind not to get upset and tearful. aaaah aaah )))