Signatera testing for residual disease
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.