Positive Signatera Test leads to Stage 4
I had a Signatera Test last week and it came back positive also with out of range CA 25-27. I had already had a clear Breast MRI a month ago. The Signatera Test shows circulating tumor cells in my blood.
This means I am now Metastatic and I am in shock. I'm only 3 years out of chemo/rads/hormone therapy with 2b and 1 positive lymph node. I am first scheduled for a CT and then a PET I assume.
I did everything. I eat clean, exercise, take many supplements. Personally,I think my chronic stress got me. I am sad and discouraged that I only made it 3 years. With 2b, I was expecting maybe a recurrence down the road.
I know there are therapies. I've read about their side effects and it makes me wonder what I am willing to put myself through depending on results. I feel like I just went through all this.
Thank you for letting me share.
Comments
-
@hippmark - We're sorry to hear this… Have you had a chance to talk to your oncologist yet about the next steps? We're sending you love and positive thoughts. Let us know how you're doing. We're here for you!💖
The Mods
0 -
Thank you. No, my oncologist is out of town for another 10 days and I won't see him until after the CT scan.
0 -
I had a high CA 25-27 in January. I had a PET scan and it was totally clear. There was no evidence of metastasis anywhere. (I haven't had Signatera testing). There's hope.
2 -
hippmark,
I just had my onc visit a few weeks ago. I finished my 5 years of aromatase inhibitors a year ago. The BCI test showed high risk of recurrence with no benefit to continue. My onc is going to monitor me going forward with the ctDNA test. Haven’t had any results yet. My understanding (someone correct me if I misunderstood this) is that you can have a positive test but still not have a distal metastasis. Like tnsplayer said, tumor markers can be elevated for different reasons.
Sounds like you have not had a CT or PET scan yet? Once you have imaging results then you and your onc will know more about whether you are truly Stage IV. I am sorry you are in limbo and worried.1 -
Glad your team is doing this kind of testing for you! Have you had tumor markers measured in the past for them to compare the current levels to? Wishing you all strength getting through the scans and the waiting.
0 -
Thank you for your replies. They lift my spirits. My blood test for CA 27-29 came back at 45. In 6 months they went from 34 to 45. The Signatera Test shows at almost a 1 (which indicates not a false positive). Those 2 tests coupled look like...well...
The Signatera Test shows CTC's of my original tumor that are circulating in my blood. At this point, they may or may not have formed a tumor. That's what the CT scan (3/27) then, if needed, a PET scan will show. If not yet, they are trying.
At this point, I can only hope that it's too small to find it not there yet and I can start some type of treatment.
I will be back with my story. Your support means the world to me. Being able to share on platforms like this is such a HUGE help.
1 -
Hippmark - Very sorry to hear about your progression. I got 3.5 years with a 3B diagnosis, and like you was really hoping for/expecting longer. I've been stage 4 now for about 2 years. There are indeed many treatment options available and some of them seem to be carrying people for years, so while it's devastating to get to this point, don't despair completely, because there are many possibilities and lots in the pipeline too. There's a good support group here for the stage 4 people, so you are not alone! Hug.
1 -
I never took the the Signatera test, even though one oncologist recommended it to me (l am stage 2a). Anyway, I went on the Natera website for the test, and in several places they say that with a positive result there is a high chance of recurrence WITHOUT FURTHER TREATMENT. So there must be treatment available, l would guess either chemotherapy or targeted therapy (Verzenio, Kisqali, maybe lbrance). I don’t think this Signatera test would exist if nothing can be done in case of a positive result. For now those are just circulating tumor cells, so no reason to despair yet, and on the Natera websites they say average time from a positive result to recurrence is 9.5 months, so you have time. If your oncologist doesn’t offer you any therapy please go for a second opinion to a specialized cancer center.
2 -
Arianna83, Yes, I am certain there are treatments and know my Onc will offer them. My last Signatera Test was 2 years ago, so I don't know how long it has been at the positive level. Tic Toc, right? According to my Onc's P.A., by definition, it's called Metastatic if it's circulating in your blood from your original tumor cells, which mine is. So that is the way they will treat me. I'm certain he will put me on something immediately.
0 -
hippmark,
I’ve been following your post but am still not understanding why you would be considered metastatic/stage IV due to circulating tumor cells. Yes, by definition, cells that move beyond the primary site are called metastatic but stage IV is when they metastasize to another site such as bone, lungs, brain, liver. Treatment is determined by where that site and the extent of the metastasis. Circulating tumor cells do not mean you have mbc.
I am not a medical professional, so I could be completely wrong, but in my 13+ years on bco, I have never heard of non-specific metastases and the presence of circulating tumor cells is not in and of itself a stage IV diagnosis. Take care
0 -
Great comments from everyone. @hippmark continue to share your updates.
And here are some potentially helpful resources:
From this page: Tumor-marker-tests
Circulating tumor DNA (ctDNA)Circulating tumor DNA are fragments of the cancer cells’ DNA that enter the bloodstream. A blood test, also called a liquid biopsy, is done to look for ctDNA. Finding ctDNA in the bloodstream also can let doctors know that cancer cells are starting to divide and grow. Because ctDNA may be in the blood even if just a few cancer cells are present, the test can allow doctors to diagnose cancer recurrence before you have any physical symptoms, such as a lump or pain. Signatera is one ctDNA test that may be done on stage II or higher breast cancer after surgery. Right now, the best way to manage a positive ctDNA test in someone who doesn’t have recurrent or metastatic breast cancer isn’t clear, but it’s being studied in clinical trials. Broad molecular profiling tests also may be used to check for ctDNA.
About ctDNA (circulating tumor DNA) tests, to search for molecular presence::
For early-stage breast cancer, the aim of these tests is to detect, and treat, cancer cells before they develop into a full-blown recurrence, thereby improving prognosis.
Personalized tests (based on original tumor sample): Signatera, Invitae, Personalis
Tumor-naive tests (no tumor sample required): Guardant Reveal
Signatera ctDNA personalized tests measure the presence of Minimal Residual Disease (well in advance before it can become picked up in scans). Signatera requires the original tumor sample.
1 -
Thank you Ex. I am only going off of what the P.A. told me when I called about the test. She said it was metastasis, not Stage 4. I assumed metastisis meant Stage 4. They know it's not recurrent in my breast as MRI was clear. I have a CT this week to see if there is a tumor and PET after that. I am hoping that a tumor has not yet formed and we can start a treatment to keep it at bay for who knows?
I appreciate everyone's comments. They are of significant help. I'll keep you posted on text results.
1 -
I’m in a very similar situation. Less than 2 years out of active treatment and my signatera test came back with a low positive at the end of January. Had a clear mammogram/ultrasound in January. So we went forward with bone and CT scans. Found metastases in my spine only.
In relation to your question about treatment and side effects: I have started Verzenio. My onc had started the process to get me on it before my scans came back, just to clamp down on the circulating tumor dna. I’m not going to say it’s great but the side effects have been manageable so far, with additional meds. So far the real struggle has been mental/emotional - like you said, I feel like I just got done with this! Hoping your CT scan comes back clear!
0 -
I just got the call yesterday that my ctDNA test was negative. I think my onc told me before I consented to the test that she would do imaging if it’s positive but no treatment unless there is metastasis to a specific site. I’ve been following this thread just wondering what is going on with others. Seems like my onc is more in line with Exbrnxgrl’s comments.
I will clarify with my onc. I thought it’s because you can have positive test but it doesn’t mean that those cells will take up residence somewhere. I’m not sure they have completed trials to know about treating just for positive ctDNA results.
My onc is a very standard of care type of physician. I have questioned myself about doing the test if I will get a result that I can’t do much about (meaning pos test and clear imaging). I don’t think I need reassurance from a negative test. Prefer to live my life. I do understand that we are all different.I will continue to follow. Thinking of you hippmark while you navigate scans💕
1 -
Thanks for your comment and your doctors perspective. I hope someone, anyone, can explain how you treat something as metastasis when you don’t even know where the metastasis is. Circulating tumor cells or other measures of potential progression are just potential. Is there a way to treat that?
0
