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Should I Share My CLL Diagnosis While In Watch and Wait?

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Published on October 16, 2020

Telling Others About My CLL Diagnosis During Watch and Wait

What's the best language for chronic lymphocytic leukemia (CLL) patients who are in watch and wait to use when telling others about their CLL diagnosis? Should you tell your children? Is it too soon?

Host and CLL patient Michele Nadeem-Baker talks to social worker Robin Katz from Lurie Cancer Center of Northwestern University about communication tips for people living with CLL. They are joined by another CLL patient, Leslie Powell, who explains how she shifted her mindset when telling friends and opening her heart back to love again.

This is Part 2 of a 2-part series on CLL. Watch Part 1: Telling Others About My CLL Diagnosis.

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Transcript | Should I Share My CLL Diagnosis While In Watch and Wait?

Michele Nadeem-Baker:

And Leslie, I know that you had mentioned that you had run to your lawyer.

Leslie Powell:

Absolutely. I thought I was a goner. Called the lawyer, made sure the will was in place. Definitely initially, thank God for Patient Power, because it definitely formed my opinion that okay, things are not quite so dire. Let's just sit tight on this and it's going to be okay.

Strategies for Sharing Your Diagnosis While in Watch and Wait

Michele Nadeem-Baker:

Robin, do you have any language that you would suggest that people like Leslie and myself and all of the CLL patients that are watching this right now, that—perhaps language that would be a good way to break it to people so it doesn't seem so scary for both us as the patients and for those listening.

Robin Katz: 

Yeah. I think there's the upside of CLL, is that it is watch and wait. And that treatment isn't beneficial. So while it's nerve wracking for yourselves as the patient, it's—you're in a good place because you're being watched very carefully, but you can proceed with your life as you know it. I use an analogy with a lot of patients to explain to family and friends, because I'm sure you heard this from the get-go. “You don't look sick.” “How did this happen?” “I don't get it.” “What's going on?” “Are you sure?” “Is your doctor absolutely sure?”

I always say, "People with diabetes or asthma, they don't look sick. We don't know they have that." This is one of those diagnoses that people have and they continue with their life, but they have to watch it. So that can sometimes help people understand that you have a diagnosis of leukemia, but you're not in active treatment at the moment. You might be in six months, six years, 10 years, so they can wrap their brain around that. I think that has been helpful for some of my patients.

Michele Nadeem-Baker:

Where were you when I needed you on that? Leslie, I know you had mentioned this. You think you don't know because you hear that it's leukemia, you hear that it's cancer. You don't really understand because people, and I would love us all to help change that conversation starting now. That people when they hear leukemia, when they hear cancer, they're still not at the point where they're accepting well, that's—you can live with that and there are treatments out there. Did people tell you a lot of these things like, “You look great.” You do look great.

Leslie Powell:

Absolutely, absolutely. And they say, "Well, how can you be exhausted? You look fine." Definitely, I think that's part of when I started telling my friends, because I was sleeping hours on end during the day. They'd call, "Where were you?" Well, let me tell you why.

How Did Watch and Wait Affect Your Relationships with Family and Friends?

Michele Nadeem-Baker:

And I know that you would also mentioned, Leslie, that while you were in watch and wait things changed in your life a lot, in your relationship, and that you changed your view along the way about continuing on with love in your life. Which I know, and I've heard from other patients that it's hard on your partner. It's hard if you're single and dating or not dating, you don't know what to do, how to tell people. What was it like for you?

Leslie Powell:

I went through a divorce from the beginning and then I went probably about three years where I just didn't date at all. I thought, there's no way I'm going to bring this into some man's life. But after venetoclax (Venclexta) and ibrutinib (Imbruvica) and the remission rates that those drugs were getting, I thought, okay, I can do this. It's not like somebody is going to come into my world and then I'm going to be gone. I ended up dating again and have since remarried.

Robin Katz:

That's great.

Leslie Powell:

Thank you.

Michele Nadeem-Baker:

And I think that is such a fabulous message to those out there who are contemplating dating or thinking, why can they date? But as you said, you became more confident as you went along in your journey. But that is a benefit of watch and wait, I think, is that you get to learn more and more, but Robin, what do you say to people when they're in watch and wait? You don't really understand it in the beginning, and of course you think, well, what if I'm one of those that has to be treated immediately? But generally, your doctor can give you some indication on that.

Robin Katz:

It's the reality of living with uncertainty. And so it's kind of having to change the narrative in your head and trying to find what I call meaningful moments in everyday life, so that you can sort of get on with your life, whether it's recovering from when you actually find out your diagnosis and there's a reason you're so tired and fatigued. And I just want to touch on that for a moment because friends and family do not understand fatigue. And it's very, very hard to explain. And I often tell patients, it's not just physical, it's mental and emotional. And so that's something that you have to wrestle with while you're going through watch and wait and treatment. And friends and family just, you may have to reiterate it to them.

But you get the rhythm, there's an ebb and flow. You hit a speed bump. The doctor says, "Ooh, the blood has changed a little bit. We're going to look at it now." You get that rhythm once you get through the first six months, the first year. It's a new lifestyle. I hate to say a new norm. I call it a new lifestyle.

Should You Tell Your Children About Your Diagnosis During Watch and Wait?

Robin Katz:

It depends on the child's age. Obviously, if they're very young, I don't think it's necessary. If they're two to six, but normally kids are pretty intuitive. And even if you think you're not talking in front of them, if you're in your bedroom with the door closed and you're talking to your sister, they know something's going on. I do recommend being honest with them at an age appropriate level. There are documents that I send to patients that will tell them what's the right thing to tell a child at a certain age? And the bottom line is depending on the age, when you tell them, the next question is, "Well, who's taking me to dance class on Thursday?" It's always about them at some point. But I think it's important they know what's going on because they sense anxiety and concern.

Michele Nadeem-Baker:

Leslie, I haven't asked you if you had any symptoms when you shared with your sons? I believe you just said that you told them right away, but were you showing any symptoms? Or did you consider not telling them until you did?

Leslie Powell:

I'm one of those people that it would have been such a burden not to tell them. If I nick the car, I'm telling my husband. I've got to fess up on it. It would have been quite a burden not to say anything. For me, it was definitely just get it out there. We don't need to keep talking about it. We don't need to hound it. Let them carry on with their lives, but it would have been burdensome to not say something.

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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