ASCO: Uncertainty and Coping

 More research from ASCO:

"Uncertainty and coping in patients with newly diagnosed indolent non-Hodgkin’s lymphoma (iNHL)."

The title of this presentation gives you the basics of what it's about, and it's pretty likely to make you say something like "Do you really thinkmI needed an ASCO presentation to tell me that?" Basically, what it says is that patients with indolent lymphomas (like Follicular Lymphoma) are anxious and uncertain because they have a slow-growing but usually incurable cancer, and need some help with developing coping strategies.

Yes, we do know that this is true.

One of the nice things about being able to register for ASCO as a patient advocate is that I get access to some additional materials besides the abstract/summary. So while it all seems pretty obvious -- yes, we are anxious -- the additional materials help round things out a little bit.

So here's the rundown:

The research focused on newly-diagnosed patients with indolent NHL. They collected PROs (Patient-Reported Outcomes), with patients giving their own thoughts about how they were feeling. They used several different surveys to do this, including Functional Assessment of Cancer Therapy to measure Quality of Life; the Hospital Anxiety and Depression Scale to measure psychological symptoms; the Prognostic Awareness Scale to measure how well they understood their prognosis; and the Brief COPE to measure their ability to cope with the diagnosis.

[Import note before we move on -- the links above will take you to either descriptions of the surveys, or the surveys themselves. If you are thinking about taking one of the surveys yourself, think carefully before you do. They are meant to be reviewed and discussed with a mental health professional. It might not be a good idea for some of us to start looking at issues on our own that we can't explore without some help. As you know if you've been reading for a while, I'm a huge believer in taking care of our mental health -- that's why this presentation was so attractive to me. But I think it's better to deal with these issues with some help.]

Then they looked at the ways the patients tried to cope with their diagnosis. They categorized the strategies as one of two approaches. The first is called "approach-oriented," including doing things like active coping, using emotional support, positive reframing, and accepting the diagnosis. The second approach is "avoidant" -- disengaging, denying, and blaming themselves for the diagnosis. Essentially, they think it's good to deal with the diagnosis, and bad to avoid dealing with it. They're probably right about that, though I think we all deal with it in the way that makes the most sense. I know people who coped very well by disengaging, for example. 

The study looked at 48 patients; about one third of them had FL (the rest had CLL, another indolent blood cancer). At the time the the patients entered the study (within three months of being diagnosed), they were given the surveys. The results of the surveys:

31.2% were found to have symptoms of anxiety and depression.

45.8% said the uncertainty about their prognosis was "the most stressful part of being a patient."

31.2% said they had "difficulty letting go of thoughts about their prognosis."

47.9% reporting that they thought a cure was at least "somewhat" likely (even though they were told it was an incurabe cancer).

None of that is very surprising to me. One thing that does surprise me, though, is that the researchers seem concerned that almost half of the patients think a cure is "somewhat likely." And I guess that is concerning, especially with patients that are less then 3 months out from a diagnosis. But that's a tricky thing. I think of myself as being just about as informed as a Follicular Lymphoma patient can possibly be, and I do think that a cure is somewhat likely to happen in my lifetime. I also have 15 years of experience with living with this disease, and the knowledge that I probably have a fairly slow-growing version of it, and as a result, I expect my "lifetime" to be pretty close to "normal." That gives researchers some time to work on this.

I'm less certain that, at 3 months, I would have felt the same way. But I also think that Hope is being undervalued here. It's an awfully hard thing to attach a number to, and numbers matter in something like an ASCO presentation. But Hope -- in this case, the uninformed or under-informed belief that everything will work out OK -- is something that I would consider an active, positive coping strategy. I'm all in favor of whatever helps a newly-diagnosed cancer patient get out of bed and face the day. (And I'm happy to talk more about that in the comments if anyone wants to.) 

As for what happened after the patients started using coping strategies:

56.3% used acceptance.

47.9% used denial.

47.9% used emotional support.

The patients who used multiple approach-oriented strategies (the active ones) reported fewer symptoms of anxiety and depression, and reported a higher Quality of Life. This makes perfect sense to me. An active approach gives a patient a feeling of control. That's why I've been writing the blog for 15 years. It's always made me feel like I'm doing something, especially at a time when I could do nothing but watch and wait. I don't think an avoidance strategy would work for me. Though, as I said, I've known and heard about patients who have used it very effectively. I think for someone with an incurable cancer, the ability to not think about it every day could absolutely lead to a better Quality of Life. Indeed, the study found that patients who use avoidance strategies had higher symptoms of anxiety, but not of depression, and did not have a lower Quality of Life. They are living their lives despite the cancer. (And maybe to spite the cancer.)

The researchers conclusion isn't to recommend any particular strategy for coping. Instead, they suggest that interventions are necessary. And that seems right to me, too. And strategy can work, even denial or avoidance. As long as the avoidance doesn't do any harm, then it's OK. And for me, the harm would be avoiding treatment. I've seen that up close, with people that I love denying that there was a problem until it was too late to do anything about it. But getting a diagnosis, and then putting it out of your head until a problem pops up? That's fine with me.

It makes me think about a patient that my oncologist told me about very soon after I was diagnosed. He said this patient had been diagnosed with FL about 30 years before. He retired and moved to the Bahamas, and once a year, would come back to the New York City area to see his oncologist, and then see a couple of Broadway musicals, and then head back to where it was warm and sunny for another year. 

I have to be honest -- that sounds a whole lot nicer than being hunched over a keyboard all winter, reading medical journals and writing bad news to you about PI3K Inhibitors. 

But we all find the best ways we can to cope, and to maintain the best Quality of Life that we can.

So if it's working, keep doing what you're doing.

And if it isn't -- talk to someone who can help you figure out what might work for you. Your oncologist is a good place to start. They might know about resources that are available to you.

And remember that I'm always here and happy to listen.

Take care.