Signatera Numbers are sky high and I'm terrified

@kat77, I'm sorry to hear about this latest news. That must've come as a sucker punch out of the blue like that when you felt things were going well. I'm tagging fellow members like @reidroberts @cjay @rjjacobsen @pjebp @mustang08 @amyb5, who may have thoughts and support to add.

Kat, have you had the PET scan done? What does your oncologist suggest as next steps? And most importantly, how are you doing with all this? (I know. Easy to ask. Not so easy to answer.)

Thanks so much for responding. I did have the PET last week and saw the results same day. There is a new spot on my right side pubic bone about 1.7cm in size that lit up from the test. The good news is that none of my other metastasis spots seem to be active. The tech recommended a pelvic MRI to get some further detail.

I discussed the findings with my oncologist a couple days later and he said he was actually quite relieved by the report because he thought it might be much worse due to the number spike. He feels that for right now, we should stay the course with the same chemo meds and keep a steady eye on how things progress. He also told me that the Signatera is relatively new and that he's had about 100 patients doing it and he's come across several incidences where numbers have climbed or spiked, only to go back down again.

While I do trust him and feel he is paying attention, and more importantly, taking action, I still feel like I should be doing something more (or something else) to address the fact that a new tumor has popped up. I speak to the doctor once every three weeks, the day before infusion, and I would like to ask some new questions that have surfaced in the days since we spoke.

My old oncologist had also prescribed the current chemo program I am on, but he said it would be for a finite amount of time. My new oncologist said I would likely be on for the rest of my life. Also, my new oncologist was a bit aghast that I had been off of chemo for 2 months (at that point) and asked why. I had no answer other than that's what my oncologist felt was okay. I wound up being off chemo for 3 months (as I believe I mentioned earlier), so I'm wondering now if perhaps this new tumor formed during that time. Because if not, than I'm worried about continuing on a chemo regimen that isn't necessarily keeping new cancer from happening.

That's what's really messing with my head right now- am I doing everything I can to keep the cancer at bay, or am I sitting back and relaxing too much? I thought I was doing everything I was supposed to after my first bout of cancer in 2016. I went for my scans, I did my blood work, never missed an appointment, even changed oncologists when I felt my first one was not serving my needs. (I'm now on oncologist #3.) And still, my cancer came back, but it returned so largely that it made no sense for someone who was being diligent. So clearly I missed something or should have been doing more. And I don't want to repeat that mistake. So sticking to the "plan" if the plan isn't cutting it is making me very uneasy.

I'm not sure what to make of the Signatera numbers going up and down for patients. I am going to ask that they start doing regular CEA tests so I can compare those numbers to my Signatera numbers. My last CEA test was in July and my number was 0.4 (when my Signatera number was 58). I don't know if my CEA climbed commensurate with the Signatera climb since no further CEA tests were done.

All that being said, I think I am down off the ceiling in terms of panic and thinking I'll be dead in less than a year, which is really important, of course. I can't function if I'm walking around in a panic all day. But yes, I would love to hear from anyone else who has any Signatera number oddities and how they played out. Thank you.

I have no special knowledge or experience with what you're experiencing.
Except maybe this: You stated:

"That's what's really messing with my head right now- am I doing everything I can to keep the cancer at bay, or am I sitting back and relaxing too much? I thought I was doing everything I was supposed to after my first bout of cancer in 2016."

First, that's a normal response and is quite common.

Second, I think it's helpful to not replay that self-doubt video in your mind and even worse to blame yourself for not doing enough. Cancer is an extremely fickle and unpredictable thing - there is nothing you did wrong and it's not your fault. There are no guarantees going forward/

Please be confident that you and your treatment team did your/their best knowing what you/they knew then and leave that doubt behind. If you should have and could have, you certainly would have!

Focus on moving forward according to your medical team's plans, but also be flexible to adjust the plan as necessary. Forget the past and strain toward the goal.

It's not my intent, but if this seems a bit rough/harsh, forgive me .

All the best!

Hi Kat,

I know that this conversation is really old but I really hope you see my post. Did the signatera numbers eventually go down? Or were to switched to a different treatment? My husbands numbers just went up after only 2 months of first line chemo. Doctor told us that it can indicate a progression or dead cells builup, but we won't know until we get results of pet scan on Thursday. Take care!

@kat77 - so sorry to read your post and praying that the plan has worked for you 🙏.

I am seeing my oncologist next week and while I have regular CEA blood surveillance tests (as well as PET-CT scans) he’s never ordered a Signatera test as far as I’m aware. Thank you for your post - I’ll be asking him why I don’t have one.

Hi - disease (MRD) assay that detects circulating tumor DNA (ctDNA) in the blood. Here’s what you need to know:

Signatera™ is optimized for MRD assessment, treatment response monitoring, and early recurrence monitoring in cancer patients. It is not really meant to track cancer in advanced metastatic disease.

A positive results indicates Tumor DNA detected and a higher risk of recurrence for early-stage cancer. Obviously this does not apply for stage 4 CRC. Suggest you ask your oncologist for the actual report, which will show a trend line. The numbers you are reporting do not appear to be Signatera test results. The company Natera which makes Signatera, offers a free half hour consultation to patients, which you can set up without your oncologist by calling their 800 number on their website. Hope this helps.

I doubt that the numbers you refer to are Signatera, as these results are simply reported as either negative or positive.

I love Roy's response... spot on. I'm certainly no oncologist or doctor of any kind, but I've been counseling hundreds of EC patients around the world for over 3 years. I'm only 4 1/2 years since dx, and just over 4 years post-op. I've had Signatera testing done every 3 months since Oct 2020.

I admit I'm puzzled when I see others reporting Signatera results while they are stage 4 and undergoing treatments. There's zero doubt your cancer is out and about and will certainly be seen in your bloodstream. But the relativeness of these numbers... I'm a bit suspect of. For many of us, Natera testing is started post-op, when it is believed we've reached NED status from all our chemoradiation treatments and subsequent esophagectomies. Are we truly NED at a month or two post-op... who the hell knows... and even our many doctors can not be sure. And if they tell you that you are now cancer free... They're full of sht... and irresponsible.

But... it's a good starting point, and if a zero baseline is achieved, future Signatera testing will be a good relative indicator of what's floating around in the bloodstream (ctDNA). But this is not the Be All End All... just another tool to monitor us like our scans and endoscopies and symptoms we are feeling. But again... I'm not sure just significance there is from running Signatera tests on active stage 4s receiving chemo treatments.

We do see protein monitoring in general... for CA 19-9, CEA, CA 125, etc. But even these numbers jumping around... can be a bit misleading. But Signatera testing... looking for YOUR cancer's signature in YOUR bloodstream, is different. All the best.

Gary

And.....not to make Kat77 feel guilty or anything, but the oncologist or doctor that is ordering that is really wasting $7,000 of our Medicare money each time when they run this....

Hi Kat,

I just got a jump in my Signatera from 2 to 22, and like you am stage 4 but should have had only microscopic disease left when the last measurement was taken. Even when I had all my tumors and nodes it wasn't anywhere close to that high

Like one of your repliers, I was also told dead cells could be the reason or an unrelated inflammation I had. The number made no sense - I'm told the tests are more accurate when they're negative.

So glad to see I wasn't alone. Thank you for posting. I hope your numbers have gone down on subsequent tests?