CURE magazine posted an interesting piece a few days ago. It was written by a cancer patient (they have lots of nice stories written by cancer patients), and it's called "Calling Cancer a 'Chronic Condition' is Damaging to Patient Care."
The title caught my eye right away. As I'm sure some of you know, Follicular Lymphoma is often thought of as a "chronic condition." I sometimes refer to it that way. It's an easy way of explaining how a cancer (which is usually thought of as "acute" -- the opposite of chronic) can grow slowly and not need treatment immediately.
But the writer of the piece thinks calling cancer "chronic" is not a good thing.
She has a point. Doctors and researchers point to the fact that cancer patients are able to live longer lives. And there's the problem, she says -- they aren't saying "more people are being cured," they're saying "more people are living longer." But "longer" could be just a matter of months.
And the real problem, she says, is that this has led doctors to redefine what it means to be successful. We get used to small victories, and forget that a cure is the real goal.
The writer is not a Follicular Lymphoma patient (she has Inflammatory Breast Cancer), but the issue is familiar to us. That debate has been going on in the FL community for as long as I can remember -- should we be going for a cure? or should we be focused on treatments that let us live a long time with a high Quality of Life? The issue came up just a few months ago as a group of experts discussed FL. As more treatments like inhibitors are created, the idea of taking a pill every day for the rest of our lives doesn't seem so bad. Many Follicular Lymphoma patients are told that we are likely to "die with FL rather than die from it."
Of course, the best answer to all of these questions is, let's do both. Let's create treatments that continue to give us high Quality of Life, with few side effects, while we wait for a cure. Of course, the difficulty there is, the more money and time put into treatments that assume FL is a chronic condition, the less there is for trying to cure it.
As I've said before (like in that post linked above, about the panel of experts), I'm not sure at this point that I could even accept that a new treatment really would be a cure. I've been living with this for so long (12 and a half years) that it's going to take some really long-term data from a really large group of patients to convince me that this thing is actually cured. But that would be my preference, if I had to choose between the two approaches.
So I'm curious -- how do you think of your Follicular Lymphoma? Does it help you to think about it as a chronic condition, something you'll probably live with forever, like diabetes? Does thinking that way make it easier on you, emotionally? Or does that just add to the anxiety that most of us seem to live with anyway?
Whatever the case, I hope that the many new treatments that are becoming available give you something to look forward to, and give you some comfort. Whether they are meant to cure us, or just sustain us, options are good.
Hello Bob, When you cure something, you typically assume that something is sick.
ReplyDeleteSo the real question is about the concept of disease. As long as FL does not cause any health problems, it is only swollen lymph nodes. These lymph nodes can of course be called malignant, but that would only be a subjective evaluation. I would also not call anyone's big nose malgine, if it does not cause him any health problems...
So yes, FL is curable if you base this assessment on a different disease concept.