The year was 2013 when I first heard of MRD (minimal residual disease). I was about 5 years post my initial cancer diagnosis, dealing with recurrence #1, and on the path to a stem cell transplant. At that time, MRD was a foreign concept to me, relatively new testing being done by my oncology team, and I had no idea how much of an impact it would have on my cancer care going forward.

Before my medical team’s now heavy reliance on MRD testing to guide treatment decisions, we simply relied on the good old-fashioned blood work results, routine bone marrow biopsies, and spinal taps to determine whether I was in remission or if more treatment was necessary. Since 2013, with every biopsy I’ve had done, they now send a sample off to California for sensitive MRD testing to determine what that MRD number is.

It’s very tricky, though, because my biopsy results can initially come back as negative, but that MRD number can still come back above 0. Technically, this means that while I’m still in remission, it gives my oncologists reason to continue treating me to try to get that number back down to 0. They do this because the MRD test shows evidence of disease still in my body at the smallest, teeny tiniest, crumb-sized point—and to not act on it would, to them, be a crime.

Personally, I feel there are both pluses and minuses to knowing what that number is. In a sense, it’s a blessing to be able to track it and proactively pounce on the cancer, rather than reacting to it later. But it also feels like a “curse” because that number dictates how often I have to pause my life to deal with it, at the mercy of my medical team. For the record, I do love and appreciate my medical team; I know they have a tough job and are just trying to act in my best interest. However, when the biopsy and lumbar puncture results come back negative, but the MRD number is above 0, they want me to start treatment immediately. That’s the downside and when my love/hate relationship with MRD testing resurfaces.

I definitely think MRD testing could be—and from my experience, has been—useful for providers as another tool to stay on top of their patients’ disease, especially for those like me who have had multiple recurrences. I think it would be helpful for patients and possibly even their medical team to have a chart or scale showing at what MRD number we should consider future treatments or when action is absolutely necessary. For example, is treatment necessary if an MRD number comes back under 20, or can it just be monitored for a certain period? If the biopsy is negative but the MRD is 30, is strong treatment necessary at that point? I would love to know if there’s an actual MRD scale that informs providers when it is necessary to take action, or if the founders of MRD testing simply determined that anything over 0 requires some form of treatment.

For reference, I’ve been dealing with a supposedly curable cancer off and on for the past 16 years, and I’m only 38. I have very much been a “numbers girl” since the second recurrence. At this point, I’m trying to take that MRD number with a grain of salt, celebrate every tiny “win” that life grants me, and continue on the elusive trek of reclaiming normalcy. If I have to take pit stops along the way to deal with that number, so be it. I will get through it. It is what it is, and it’s going to be what it’s going to be. In the meantime, I’m going to continue living and doing me—well, as much as my body and bank account will let me.

By: Sabrina Shelton