Remissssion, Remission! (What does that word mean?)

Confetti by Judit Klein

Remisssssion, Remission! I can’t say that word without channeling Teyve from Fiddler on the Roof. Could be a Jew thing.

When I sing “Remission!” like that, it sounds like cause for confident celebration. In truth, the word stirs up a lot of ambivalence for me. I’ve discussed my feelings about the (mis)concept of remission before, but it recently came up again in a conversation with friends and it was apparent that I needed to revisit my thoughts on the topic.

When I share that I have good scans, I often get asked, “Does that mean you are in remission (or No Evidence of Disease ‘NED’)?” This well-meaning question is hard for me to answer. The asker usually has a smile on, seemingly anxious to pop a cork and throw confetti. I believe many people understand remission to mean almost cured … I know I did, before I got into this whole mess. Sometimes it feels like (and I may be totally unfair and off-base about this, but I want to be honest) the asker is ready for this to be over – for them. But, “over” isn’t something that’s typically on the table for someone with my diagnosis. Last month, my ROS1 friend who’s NED from the neck down, turned up with 30 brain mets with zero symptoms. A couple weeks later, another ROS1 friend, who had recently celebrated her NED status, discovered cancer back in both lungs. Today, I got news that another ROS1er died. All three of these women are younger than me, were diagnosed after me, and had at some point been in what could have been called “remission.” Three more reminders, in a constant stream of them, that achieving remission or NED status is no guarantee of any kind of permanence.

So, what does “remission” really mean? To answer the question, yes, my current doctor has used that term to describe my current status. But, my previous doctor would not use it. The truth is that “remission” has no globally accepted medical definition. Some doctors use it when their patient shows no signs of disease after one scan. Some doctors won’t use the term while their patient is still receiving treatment, no matter how many clean scans. Some doctors wait until their patient shows no signs after 1 year, or 2 years, or 3 years, or 5+. Since “remission” means so many different things to different people, the term essentially has no real meaning.

I am still in treatment. The pill I am taking does not cure cancer, it only represses it. If the pill stops working (and I’m already beyond the 18 mo. median effective time, having been on it for 27+ mos. now), there is no clear follow-on treatment available to me. There are a couple of things that may be possible via clinical trial, but getting into a trial and also having that experimental treatment work are both very iffy. There might be a drug I could try “off label,” or I might be able to return to chemotherapy for a short term. None of these things are reliable options.  

So, if “remission” means something close to a cure for you; if it means a place where a patient like me can feel comfortable and not have a legitimate worry that it could crop up again at any moment and threaten my life within weeks, then no, I can’t claim remission. If it means simply that the cancer is controlled as of today, then yes, I can; but that doesn’t mean nearly as much.

What I am saying is: easy on the confetti. It’s great to celebrate good scans, so long as we keep them in perspective. Maybe instead of exclaiming “Remissssion, Remission!/Tradition!” we can try to focus on celebrating today and sing a hearty round of L’Chaim, L’Chaim, To Life!

L’Chaim! by Judah Gross