Wednesday, June 29, 2016

Watching and waiting?

I'm behind on this, like I'm behind on everything these days: Nice article from the June 9 issue of Blood, called "Is watch and wait still acceptable for patients with low-grade follicular lymphoma?"

I haven't written about watching and waiting for a while, because I was tired of reading articles that said they had the answer about whether or not it was still a good strategy, and then it turned out that they really didn't have the answer. Obviously, I have my thoughts on watching and waiting -- I think it's an acceptable thing, and I did it for two years, and I would make that same choice today.

I'm not sure there really is a definitive answer here, either, but I'm not sure that they are trying to give us one. It's more a review article, looking at what we know about Follicular Lymphoma and whether or not that can tell us anything about watching and waiting.

And there's lots that we know.

We know that median survival for FL has gone up over the years, and that Rituxan probably has something to do with that. There are some experts who say that we shouldn't bother with watching and waiting because one of the reasons for it was because it let us hold off doing any kind of treatment. When there are limited treatments, and they have nasty side effects, it's better to hold off on treatment for as long as possible. But now that we have Rituxan, plus more good treatments on the way, may be we don't need watch and wait anymore?

We also know from several studies that patients who do watch and wait have no real difference in Overall Survival. Some studies show small differences in things like time to progression -- how soon a patient's disease will grow to the point where treatment is needed. But no survival difference. And if that's the case, maybe watching and waiting is OK to do? As my dear Dr. R told me, it's better to do no harm, and as nothing was changing, observation was a fine strategy.

We also know that major cancer organizations' guidelines call say that watching and waiting is acceptable for certain FL patients -- basically those who don't have symptoms, and have a slow-growing form of FL. You'll find that advice in guidelines for groups from the U.S., the U.K., Canada, Italy, and Europe at large.

What would be great, say the authors, is if we had a biomarker that told us that watching and waiting was the best choice -- some kind of gene or protein or enzyme that let us know that the patient would not progress quickly. Amen to that. It would be wonderful to know how this messed up disease is going to behave in the future. But so far, we aren't there.

I'm pleased that the authors at least nod toward the emotional aspects of watching and waiting, giving it one sentence: "A physician’s enthusiasm for watch and wait in this setting should not override the patient’s preference for therapy based on anxiety about not treating a known cancer."

But I'd sure like to see more than one sentence.

I've said before that Follicular Lymphoma is as much an emotional disease as a physical one. It has to be -- as patients, we have more time to think, and for most of us, at least at some point, those thoughts are going to be negative. Especially at the time we need to make that decision -- soon after we get the news that we have cancer. You can show us all kinds of charts and statistics about Overall Survival rates. But our thinking brains aren't working at that point. It's our feeling brains that are making the decisions for us. We need someone who knows how to talk to us at that point.

I'd like to see an article aimed at oncologists that talks about how to consider a patient's emotional state when describing watching and waiting as a treatment option. More than a sentence -- I want a whole article.

So, yeah, in the end, this review article does a nice job of laying out what we know about FL and watching and waiting. But it still isn't giving me any answers. We need to write about watching and waiting in a new way. Someone needs to write that article.

(Maybe it will be me......)

4 comments:

Anonymous said...

Thank you again.
Maybe it will be you! I'm always anxious to read your latest post.
I've been W & W for almost 2 years now.
Thank you!

Unknown said...
This comment has been removed by the author.
Nikkie McCaul said...

Finally have found a blog that talks bout what i am thinking and feeling, my husband has just put me onto your blogs.
Thank you!
Im 42 and have had low grade non hodgkins follicular lymphoma for 4mths.
Look forward to reading more.

Lymphomaniac said...

Thank you both! Glad you like the blog. Hope you both have very long watching and waiting.
Bob