Jamie/Paris,
You and I are both stage I's. It is hard to find a comfortable place to sit on this one, since some Stage 0's and I's do recur, and it even may be a picture of no recurrence until late in the game but perhaps more common farther out. You are HR negative, I am HR positive so to me that might favor more frequent markers and scans for you as compared to me.
dlaxague and I disagree somewhat in our interpretations of studies and conclusions made about this question. It is sort of like asking whether a glass is half full or half empty. I interpret the recommendations as meaning there is no clear evidence one way or the other plus calling for additional study to reach a firm conclusion. This perspective is truly different from the interpretation that based on studies there is no proof that more frequent testing is helpful. Both say the same thing but from different perspectives.
dlaxague and I agree about the importance of the question itself, based on the awareness that resources are limited, and testing can be expensive as well as resulting in further radiation exposure. The more health care costs us all, the fewer people who are likely to be able to get it. In that regard there is some very real logic to making sure testing is actually meaningful.
However, it makes no sense to me for doctors to make it unlikely for those who desire testing and don't have anxiety about it to be prevented from having testing based so that those who do get anxiety and have the ability to refuse testing don't have to consider the question in the first place.
Both my PCP and onc feel the markers are useful if not yet entirely accurate. As a T1c with some DCIS I have markers with each checkup (first 2 years quarterly, then every 6 months for 3 years, and now annually). Because I did not get trastuzumab or lapatinib and am now over 5 years out, I am going to see my PCP to try to continue markers every 6 months.
Otherwise, I went by symptoms. I did get a brain scan once when I had some repeated common vertigo episodes, so I now have a baseline to go by if I need it. I also got some CTs for right-sided abdominal pain accompanied by elevations in liver labs, because the liver is so hard to verify for recurrence without those.
Just one NED T1c opinion at 5 years out,
AlaskaAngel
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