A Holistic Approach to "Watch and Wait"

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The watch and wait process can be a challenging and stressful time for chronic lymphocytic leukemia patients and their families. Dr. Rena Szabo, licensed psychologist, shares with us how her team and the patient’s team come together to keep track of the patient as a whole, instead of just keeping track of the disease. Monitoring the day to day is important when enduring the watch and wait process. Dr. Szabo also explains how important it is for the patient to be surrounded by a care team, even after treatment has been administered with success.

Sponsored by the Patient Empowerment Network, which received educational grants from AbbVie and Genentech. 

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Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you. 

Carol Preston:

And now, we have our psychologist, Dr. Szabo.  I want to make sure I pronounce it correctly. Come close.  Come close.  So we spoke to Melody Griffith from Banner who talked about specifically the stress testing.

There are so many on this team. Talk about your specific role and, basically, what you’re seeing and hearing from patients. It’s terrifying. I’m a CLLer for almost nine years. And I’m used to it now.  But I remember when I heard that. I couldn’t get past the word cancer. 

Dr. Szabo:             

So during the watching and waiting phase, I’ll see patients and work with them and their family members or care members. And I work with the team. I interact with them weekly during meetings on specific patients and cases.  We have an incidence of anxiety and depression that comes when you’re first diagnosed.  We then go through this watching and waiting process, which is very hard for family members and for my patients to understand.  And then when you head into the treatment phase, sometimes, we end up thinking that now, I’m there.

I’m going to be okay. And quite frankly, we see the same amount of anxiety and depression.  And actually, in the research, there is no difference between that anxiety and depression no matter what phase of this process you’re in in this journey. What we do know is that, usually, early on, we see more anxiety. Towards the end, we see more depression. And we see it a lot in the family members. And so in our team approach, we’re able to actually work as a team with the team that is our patients. So our two teams come together. And we can find all those little pockets that might otherwise be unnoticed. 

As somebody with CLL, as you know, as you’re starting to age, sometimes, you’ll start to go through various treatments or clinical trials. And you’ll wonder I’m starting to experience this or have this type of a symptom.  Is it because of my treatment? Is it because of a progression of the disease process? Is it because I’m aging?  So I think, at times, it’s helping the family members and the patients identify that.

It’s also helping my team members and my colleagues to sit down in those meetings and say, “Wait a minute, this is also going on for this individual. They may not bring this up with you, but here’s really what’s happening at night or before work in the morning or when they’re going on a family event.” And so as a team, we can look at that whole person rather than just the disease process and the cancer. 

Carol Preston:   

Well, as we heard just before you came up here, people are grateful that I’m more than the diagnosis. But you have jarred a memory for me when I first finished my first round of treatment, and I was in complete remission. And I remember my friends took me to lunch. And I was not feeling happy because I said, “The treatment probably—everything was at bay. But now, the Damocles sword is hanging over my head, and if and when is it coming back?” And indeed, it did come back. But at least the second time around, I said, “Okay, this is what life will be.”

But I didn’t feel better when the treatment ended. It’s really—you’re helping explain this now.

Dr. Szabo:             

That’s definitely a common occurrence. I think we do a really good job, in our profession, of working with the individual and, in some cases, the families at the beginning during the watch and the wait and during the treatment. And then when the remission hits, everybody goes away. And you have once- or twice-a-year checkups. And then, you’re alone with your thoughts. And everybody around you thinks, “Great, you’re in remission.  We don’t need to talk about this anymore.” And it becomes this thing that you put on a shelf. And that is actually when we have far more distress among some of our patients, and even the family members because it impacts the whole system.

Carol Preston:   

Well, great advice from Dr. Szabo.  And again, I’ve said it two times already, but I’m a big believer in repetition that it’s so important, if you can, to get to a center where there is a team. You are more than your diagnosis.

And that’s a very, very important takeaway. And you do not have to travel this road alone. Thank you so much, Dr. Szabo.  

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you. 

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Page last updated on June 18, 2015