Am I Going to Let This Number Run My Life?

This morning was my six month follow up for thyroid cancer.  I go every six months because I have detectable tumor marker: Tg (thyroglobulin) and TgAB (antithyroglobulin antibodies). Because I am TgAb positive, the Tg is not a reliable indicator, so the TgAB is used as a surrogate tumor marker.  Mine had been on the decline and then steadied itself around 2.1  Until now. It’s more than doubled so now I am on a three-month follow up schedule.

I have known that the number doubled for a couple of weeks and I have been trying to live my life as “an indeterminate responder” for nearly six years. It’s wrecked me because that very brief time where I had cancer and was in treatment was so traumatic I am in fear of living it again. Everything from not being supported by family and friends, to Dr. Overinvolved and his rapidly cycling moods and actions, my inability to plan or see a future for myself, to the mistreatment I experienced in the hospital, to my loss of feeling safe with doctors and in this world; and that sense of knowing, to quote Virginia Woolf, “It is possible to die.”  This little number continues to wreck me and leave me unsteady every hour of every day. It is at the center of my depression, that I know for a fact.

How can I plan a future with this hanging over my head?  I am watching myself crash into the wall in slow motion and this could go on for YEARS before anything shows up on imaging and something can be done about it.

From an educated patient’s point of view, I fail to see how knowing I have this little number is contributing positively to my care. They won’t explore it further; I haven’t been scanned since I had RAI in 2009 and the ultrasound has not shown anything suspicious in six years. I cannot come up a medical reason as to why knowing this number and using it to continue to declare me NOT free of disease is doing anything but lining the pockets of my medical center. This means more appointments, more blood work, and more payments from my HMO.

Is it all just a money grab that has nothing to do with treating cancer?  I tend to think so at my most rational, thoughtful moments. But I cannot get out from under the anxiety and the fear of going through what I already went through even though the losses already happened and are permanent.

I am not sure what to do.  I will go back in three months. But after that…all bets are off. Just test my TSH and leave me alone. That’s the road I would prefer to take.


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