Has anyone been told that they have ctDNA in their bloodstream?

Posted by sirene @sirene, May 3, 2023

Has anyone been told that they have ctdna in their bloodstream after doing a liquid biopsy? If so, what did your oncologist say about it?

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@semurrey

Thanks so much for sharing- I am hopeful in the technology behind liquid biopsies. May I ask what health center you are located. I'm being treated at Dana Farber for ILD, Stage 1 (1.8cm, ER positive, HER2 negative). I finished radiation and have been on Letrozole for four months. My onco feels scans before 1 year post radiation are not helpful and this makes me very anxious. I asked about blood work and again she doesn't feel helpful. I'm going to ask about Guardant test. Thanks again for sharing!

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I am being treated at USA Mitchell Cancer Institute in Mobile, AL as well as MDAnderson in Houston where I went for a second opinion. MDA stated that they would not have done Guardant on me since it is used mainly for metastatic patients. My doctor ordered it as well as Signatera because he will not do unnecessary imaging. I did however have a ct after the positive result on Guardant. My dr at MDA does not recommend any further imaging but is doing an ultrasound on my chest in a couple of weeks, due to some pains that I have had. I was stage 1A, 1.4 cm, had bilateral in January and am also on Letrozole. I had not started on the medication when I was tested on Guardant. I have put in a call to speak to a genetic counselor for Guardant and have spoken with the Signatera genetic counselor twice.

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Thanks so much for your reply! Protocols for follow up differ so much.

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You are welcome. And yes, they do. I never had a pet scan but so many others have.

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My ctDNA test just came back positive. PET scan on Tuesday.

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@lisa0003

My ctDNA test just came back positive. PET scan on Tuesday.

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🙏🏻🙏🏻🙏🏻 Was this your first Signatera test? Do you mind if I ask what kind, stage you were and how long ago that you were diagnosed? 🙏🏻🙏🏻🙏🏻

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@lisa0003

My ctDNA test just came back positive. PET scan on Tuesday.

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I’ll be thinking of you and hoping it’s good news. Apparently there is no firm consensus about what a positive might mean but if it means an EARLY detection that a good advancement for us🌸

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@lisa0003

My ctDNA test just came back positive. PET scan on Tuesday.

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Hi Lisa, any update from the PET scan? How are you doing?

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@sirene

I am being treated at USA Mitchell Cancer Institute in Mobile, AL as well as MDAnderson in Houston where I went for a second opinion. MDA stated that they would not have done Guardant on me since it is used mainly for metastatic patients. My doctor ordered it as well as Signatera because he will not do unnecessary imaging. I did however have a ct after the positive result on Guardant. My dr at MDA does not recommend any further imaging but is doing an ultrasound on my chest in a couple of weeks, due to some pains that I have had. I was stage 1A, 1.4 cm, had bilateral in January and am also on Letrozole. I had not started on the medication when I was tested on Guardant. I have put in a call to speak to a genetic counselor for Guardant and have spoken with the Signatera genetic counselor twice.

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Hi @sirene-thanks so much for sharing! I was curious if not being too nosy why a mastectomy vs a lumpectomy? Perhaps you are young as at 57yrs, 1.8cm ILC I was encouraged to go for only lumpectomy. After radiation I have started on Letrozole and hanging but I sure hope I can get my insurance to cover an MRI as lobular doesn't really show up well and I have very dense breasts. These liquid biopsies should be used as a stacking tool. Are they terribly pricey? Best of luck xoxo

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@semurrey

Hi @sirene-thanks so much for sharing! I was curious if not being too nosy why a mastectomy vs a lumpectomy? Perhaps you are young as at 57yrs, 1.8cm ILC I was encouraged to go for only lumpectomy. After radiation I have started on Letrozole and hanging but I sure hope I can get my insurance to cover an MRI as lobular doesn't really show up well and I have very dense breasts. These liquid biopsies should be used as a stacking tool. Are they terribly pricey? Best of luck xoxo

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I don’t mind at all. I’m 65 now but was diagnosed at 64. I had more than one tumor, with the largest being 1.4 cm, so they said that mastectomy would be the better option, considering that. I had a second surgery due to the unclear margins. I started Letrozole at the end of March and am doing well on it. I had a few side affects, insomnia, some hair loss, hot flashes, but they have lessened a lot. I occasionally get an ache in my knee and finger but exercise seems to keep it away. My insurance covered the Guardant test. I have had two negative Signatera tests that insurance wouldn’t cover but Signatera covered the cost so check with them if you’re interested. Guardant is strictly a blood test while Signatera uses your tumor and blood to detect any ctdna in your bloodstream. I hope that this helps.

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Thanks so much for this helpful info. I see my oncologist for my first mammo post surgery etc (one year after my last mammo, MRI etc pre surgery) - Dana Farber in Boston likes to wait one full year. I'm hoping I can ultimately be on a 6 month alternating schedule with mammo and MRI. Stay tuned and please keep us posted. I think both Guardant and Signatera are wonderful "stacking" tools and hope to go that route too as like we say early detection is really all we have to play defense! xoxo

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