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Does anyone have CtDna blood test added In their monitoring routine?

KimberlyB40 profile image
13 Replies

Hi! Kim 43 MBC since 3/2021. I do alot of reading of clinical trials and medical journals. I found this CtDna blood test that SUPPOSEDLY detects cancer cells in the blood up to 10 months sooner than a Petscan. My Oncologist didn't know about this testing so after fielding out all the companies that do it with the tumor profiling trying to suck me in with their bs, I did find a company whos CEO spent so much time with me answering all of my questions. This testing was JUST aoproved by Medicare so i believe its about to be used for many of us. UNFORTUNATELY, the end result with my case in peticular MBC bone only, it sounds like they can't change anything until the cancer is there enough to be biopsies, but I don't buy that so I'm on a new mission to find someone who may have used it or heard of it. Has anyone had a CtDna blood test?

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KimberlyB40
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Trissh profile image
Trissh

I just posted this same question and saw that you had asked earlier. I know Medicare approved the use for monitoring immunology treatment in October of this year and I was curious about deciding amongst all of the treatments and trials available. My tumor analysis (Caris) is 2 years old and if a treatment change is required soon (had a new bone met last scan that I got zapped), I would like to have an up to date accounting of mutations. --Trish

hurricaneheather profile image
hurricaneheather

i've done the ctDNA testing, with Signatera, for one year; i've made a couple of posts. if interested, you could read about Signatera MRD on 'my' breast onc's website: pinklotus.com/breastcenter/...

MaryCos profile image
MaryCos

I just insisted on it with my new oncologist. My results came in on the 20th, but they have not shared the results with me yet. (Which is another issue that I shall take up as a patient advocate. Unacceptable!)

I am bone-only. I mention this because you stated this is your situation as well. My last scans (a month ago) still show me as stable. (Doctors won't call it NEAD since no one can be sure what is going on with sclerotic bone---but I have little to no active cancer that can be detected through scans.) But my labs from scan day showed the first marked increase in my regular tumor markers since I started treatment. (Now, I have always had low markers in comparison to many with MBC, but I never went over 50 until this test. Jumped up 20 points. Two days later, I asked my new oncologist (as I left Hopkins to receive treatment elsewhere) to re-run the tumor marker test so we could rule out lab error, etc. That second test came out even higher, by 5 points.)

I am pretty sure I won't be staying with this new oncologist for very long, but she has been pretty good at hearing me. That said, she is not an MBC expert... and SHE said that our regular tumor marker tests predict progression 6-months before a scan would. Wrong. (Verified by some of the most knowledgeable patient advocates I know.) The liquid biopsy CAN predict progression, but there is additional information that can be gathered that is very, very important as well. And that is why I pushed for it.

Liquid biopsies can detect newly-acquired mutations, which affect resistance. So, if my test comes back to NOT show any new mutations... there is a good chance that my tumor marker rise can be ignored. Additionally, the liquid biopsy can determine changes in our subtype. One of my friends just found out that she is no longer HER2-low but HER2-. That impacts treatment options/selection, of course.

I've responded so well to treatment that there is nothing to be biopsied through regular tissue biopsy. Tracer uptake during my last CT scan indicates something in my unaffected breast, so I am getting a mammogram in about 2 weeks. (My last one was more than 1.5 years ago, so recommended "comparison" to that diagnostic made no sense to me.) Basically, I am looking at all the reasons why my tumor markers may have bumped up. And no one would bother with any of this if I did not demand it. But for ME... I seek to rule out cancer (hopefully), then look at other reasons why my markers went up. (PS: I have access to some of the best oncologists out there through my advocacy work, and one just told me not to sweat my tumor markers. Which I KNOW, intellectually! But, we patients still what to know what is causing it... as even non-cancerous conditions can cause a rise in markers.)

Liquid biopsies are being used more regularly now. I was diagnosed de novo MBC in July 2020, and this is my first. My new oncologist first told me that she wanted to re-test my OLD biopsy tissue from June 2020, specifically to find out if I might have the ERS1 mutation. Well, my old report from that time (genomic) said I do not. (She was probably embarrassed when I came back to tell her that I looked at my report again and it already said I am negative for this.) So, I pushed this new doctor to tell me what NEW information could possibly be gained from re-testing the old sample.... 3.5 years later. That is when she agreed to the liquid biopsy.

I would not have pushed to have this done NOW if there wasn't an uptick in my tumor markers. And yes, tumor markers only measure the shedding of a certain protein... NOT tumor burden. Yet, something appears to be happening in my body and I need information. I did the Guardant360 test. Right there at my oncologist office's lab.

I wanted this test to find out about the molecular changes that lead to drug resistance. Certainly, too, we need to make sure our subtype hasn't changed. So, what I am saying is... rather than looking at indication that progression is coming... I want to know WHY. These tests give us actionable information.

genealogy74 profile image
genealogy74 in reply to MaryCos

I have had the Guardant360 test two years ago. I am currently stable. I'll be interested in whether or not your test results show anything interesting and/or treatable.

MaryCos profile image
MaryCos in reply to genealogy74

ME TOO!!!!

I am also perfectly good with it showing NOTHING different from when I first started treatment (and had my first/only genomic testing)! In fact, that is what I HOPE for... but if changes are presenting, information is power.

KimberlyB40 profile image
KimberlyB40 in reply to genealogy74

I have a rep on speed dial from Signatera. The Signatera test isn't the same as the Gaurdian 360 or any of those tumor profiling. I don't remember why but I can send a screenshot of our conversation because I mentioned that I had the oncoscore test for tumor profiling amd this is totally different. They contact who ever has the tumor so they do their own testing checking for so many more DNA factors and then use that profile with the cancer cells In the blood to detect so much more information. It can detect progression up to 10 months faster than a PetScan. It can see when medication isn't working anymore, and even what medications can work. It's FINALLY just approved by Medicare which means the other companies are about to follow. It's costly so I feel that's a reason Dr's aren't really using it so much. That and they keep lumping Sognatera into the tumor profiling companies and that's just not what this test is. My specific problem is - my Oncologist says what if it comes back positive that the cells are back? "What changes to your treatment ? Nothing until we test the new cancer "I want this test so I'm curious to see who actually knows about it and who's docs r using it

MaryCos profile image
MaryCos in reply to genealogy74

Got my Guardant360 test results back last week. I also ruled out other possible reasons for my tumor marker rise, such as getting a mammogram/ultrasound last week. My scans and other diagnostics all show me to be stable. The liquid biopsy couldn't detect ANY mutations (which surprised me, since I previously showed the PIK3 mutation with my initial tissue biopsies), and there wasn't much the test could detect. In fact, that was the extent of the report, really. My understanding from the report is that this happens with low tumor burden and stable disease (i.e., lack of circulating tumors). So, this gave me added peace of mind that I am not hitting up against resistance to my current treatment.

Gardengirl345 profile image
Gardengirl345

I started ctDNA testing early summer. I've had two tests, both were negative for any tumor dna. Wonderful news my doctor said, that plus scans this month show stability! But I still worry. I have lobular cancer and am doing the new FES PET scan as well. It tracks estrogen uptake, not sugar. Supposedly good for lobular, but I worry about these new tests being completely vetted, my traditional CA27/29 tumor markers have been climbing up this year (39 to 52) and I have some tinges of bone pain in my back and ribs. My doctor is great and attentive, but doesn't think it's of too much concern. She wants to focus on the scans and the ctDNA results. I'd really feel better if all three monitored areas matched up better.

TammyCross profile image
TammyCross

What are the differences among Guardant360, FoundationOne, and Signatera? Is the last the only one that shows ctDNA?

Also, how often do you repeat the tests? (I had one with my first progression. It showed a mutation that is apparently bad news but there is not enough research on it to develop a specific treatment.) I am going on my third treatment and I think it is working, so maybe I don't need a new test?

Gardengirl345 profile image
Gardengirl345 in reply to TammyCross

I'm not sure how these tests are different, but with signatera, I repeat it every 3 months. It's a blood draw and they come to my house. Results take one week.

KimberlyB40 profile image
KimberlyB40 in reply to TammyCross

I have a rep on speed dial from Signatera. The Signatera test isn't the same as the Gaurdian 360 or any of those tumor profiling. I don't remember why but I can send a screenshot of our conversation because I mentioned that I had the oncoscore test for tumor profiling amd this is totally different. They contact who ever has the tumor so they do their own testing checking for so many more DNA factors and then use that profile with the cancer cells In the blood to detect so much more information. It can detect progression up to 10 months faster than a PetScan. It can see when medication isn't working anymore, and even what medications can work. It's FINALLY just approved by Medicare which means the other companies are about to follow. It's costly so I feel that's a reason Dr's aren't really using it so much. That and they keep lumping Sognatera into the tumor profiling companies and that's just not what this test is. My specific problem is - my Oncologist says what if it comes back positive that the cells are back? "What changes to your treatment ? Nothing until we test the new cancer "I want this test so I'm curious to see who actually knows about it and who's docs r using it

susiemarmite profile image
susiemarmite

yes. Not enough tumour cells in the blood to be picked up in the test so the test revealed nothing.

KimberlyB40 profile image
KimberlyB40 in reply to susiemarmite

That's good news! I believe the test is to be repeated every 3 months or so and once they do detect the cells then you can act faster to change treatment before widespread. It can anything? progression up to 10 months sooner than a Petscan so this is why I'm so curious why more doctors aren't using this. Beside the fact insurance doesn't cover it except Medicare right now. Did your Dr recommend doing it again? And did it cost anyting?

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