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Signatera testing for residual disease

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Hi everyone! I'm new here. I was diagnosed with Hormone + IDC last year. I was eventually deemed grade 2, stage 1b, with 1 positive lymph node plus a second with micromets. I had DCIS on the other side. Lymph nodes were taken from both sides with no additional ones being positive.

I did nipple sparing BMx with tissue expanders, followed by dense dose AC/T, then radiation to my entire breast, chest wall, armpit, and supraclavicular lymph nodes. I finished all of that in July, and started AI's in August.

I signed up for Signatera testing, which was done in September. I had seen their literature and thought that it would be so great to be proactive about a potential future recurrence and that if any cells eventually popped up we could start treatment right away to give me the best outcome possible!

Unfortunately, my very first results came back positive at .03 mTM/mL. This number is extremely low, but they confirmed that the numbers don't matter- it's either positive or negative.

Their website states that "99% of those with a positive test will have a recurrence without further treatment". Unfortunately, what they did not say was that there isn't any treatment available at this stage. I essentially have to wait until it has metastasized enough to show up on imaging before we can know how to treat it.

I'm trying to get the word out, because, while I think this testing is monumental for the future of cancer treatment, and it's ultimately very promising, it is also devastating to get a positive and be helpless to do anything about it. I think that information should be more clear before patients are given the option to take the test.

Also, I am seeking any other people who have had a positive test after completing active treatment to see if your oncologists were able to come up with any suggestions? I will literally take any reasonable suggestions.

Thank you!

Comments

  • parakeetsrule
    parakeetsrule Member Posts: 605
    edited October 2022
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    I don't know much about that test but if their results are accurate and a positive result indicates a recurrence will happen, that means a couple things.

    One, your oncologist can be more proactive about monitoring you and maybe doing more scans than they might otherwise. A recurrence doesn't necessarily mean you need to wait to develop metastatic cancer, it could be a local recurrence that's easier to treat.

    Two, this could be solid evidence that you need to stay on AIs as long as possible. Some women also take other meds like Xeloda as a preventative measure so that could be an option.

    Also, while this sucks, all breast cancer patients are treated as though a recurrence is going to happen. Up to 30% do actually have a recurrence. So not much has changed for you, unfortunately, except now you know it will happen.

    All that's assuming the test results are in fact accurate. How can they possibly know? Hopefully this will make sense but if this test is new, then they would have zero data from women who had cancer farther back than since the test had existed. (i.e., if the test is 2 years old, they can't know if women who had cancer more than 2 years ago will have a recurrence or not)

    I dunno. It seems like not a great test yet. Talk to your oncologist and see what they think. They might have more insight into the accuracy.

  • blue22
    blue22 Member Posts: 172
    edited October 2022
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    Did you discuss this with your Oncologist?

    I understand your frustration, right now there are not clear guidelines on using tests like Signatera, but hopefully with time and participation of people like us, there will be enough data to make these tests useful and a game-changer.

    I also am using Signatera, and am fully aware that there is not an obvious next step if it comes back positive - I discussed this already with my Oncologist.

    I am really sorry your test came back positive. Hopefully your Oncologist will have some ideas of what to do next. In addition to AIs to reduce the risk of recurrence, there are medications like Verzenio, but I think you have to be stage III or IV for that.

  • kaynotrealname
    kaynotrealname Member Posts: 422
    edited October 2022
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    Unfortunately I don't have any insight to offer you here as I have not taken the Signatera test but I have read up on it and I wonder why your oncologist did not inform you as to how useless they are at the moment? If you're negative great but that doesn't mean you'll be negative forever or even if you're actually negative. It's not like they check all your blood after all. Maybe the sample you gave was cancer free but there are cancer cells elsewhere. And then if you're positive, what do you do? No one knows yet. The test is still too new. No idea on whether it means everyone who is positive will relapse and even if a high number do, what is the right treatment for just circulating cells. More chemo? But are they replicating quick? Is that looked at? Because if not, chemo won't offer much benefit, etc. Anyway I see a lot of people mentioning this test but considering there's no treatment protocol in place for any positive results I don't see how the knowledge is clinically useful. To me it just seems one more thing to worry about that you can do nothing about so I just wanted to put that out there as consideration in case some people happen upon this thread. I know the results must be horribly stressing to you and I hate that you have to feel that or anyone has to feel that. I wonder though if your oncologist might be willing to try verzenio? It has been approved for early hormone positive breast cancer patients as long as they have node positive disease I believe. Your insurance company would have to approve it but it might give you another way to keep the cancer cells at bay.