Recovering From the Shock of a Cancer Diagnosis: Understanding Acute vs. Chronic Conditions

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Andrew Schorr:

Let's meet somebody who's living with it, and that's my new best friend, Cathy Hamilton, who joins us from Lawrence, Kansas.  Cathy, you've been in this watch and wait period now for 10 months, right?  

Cathy Hamilton:

Just—yes.  10 months plus.  

Andrew Schorr:

Okay.  How did this start for you?  

Cathy Hamilton:

It started with a routine annual physical that I got last January.  I went in early to do my blood work, and when I showed up for the exam a couple weeks later my internist told me that my lymphocytes were slightly elevated, and I emphasize slightly. And my neutrophils when a little low and that she would like me to come back in three weeks and test again, because it was right after the holiday, and I'd been with my grandbaby at the time, and she was thinking that maybe I picked up some kind of virus.   

So I went back and, sure enough, got a call phone call on a Friday night from the doctor herself, and as our doctor friends know that's usually not good news, that phone call. So she said the numbers hadn't changed and that now they were seeing some smudge cells on the slide, which was indicative of CLL.  So two weeks later, I find myself at an oncologist's office.  I was getting a flow cytometry test, and that confirmed the diagnosis.  

Andrew Schorr:

Okay.  Now, you had never heard of this.  

Cathy Hamilton:

Never heard of CLL.  But leukemia put the fear of God into me, I'll tell you that.  That word was frightening.  I just didn't realize at the time that there were acute kinds and chronic kinds and was relieved to find out that I had a very slow?progressing indolent case so far. 

Andrew Schorr:

Right.  And that's true, and I have to tell you there are some people, me included back in 1996, I wasn't really clear that leukemia was a cancer, right?  And then you talk about acute, chronic, is it this type, is it that type, is it indolent. Okay.  So we're going to continue.  But first, Phil, you have had to give that bad news to people who have no frame of reference, maybe were referred to you from their general practitioner.  And I know when I walked into MD Anderson I had never been into any oncology clinic, floor, office.  It was like a terrifying stranger in a strange land.  So, first of all, how do you explain this to people, first, what they have?  

Dr. Thompson:

Yeah, so I think what you're saying is true.  I think people come in with an image in their head when they hear the word “leukemia” or of people with no hair, horribly nauseated, vomiting, you know, IV lines, terrible quality of life.  And I think one of the things I try and do is dispel as much as of that as quickly I can. Also, people tend to come in terrified that they're about to have a bone marrow biopsy and all sorts of other tests. So I try and kind of put people at ease, tell them that we're not going to be doing all these things before we start so that people can hear the rest of the conversation.  

Andrew Schorr:

Yeah, and I know I didn't hear much.  I was on the—not on the floor, but, Esther, my wife of 33 years, we were in tears. And, Cathy, what about you?  Did you hear everything the doctor said?  

Cathy Hamilton:

No, I didn't.  My internist had warned me that she thought this was what it was, because I always ask.  As a former reporter, I suppose that's where this comes from, like, okay, what's the worst?case scenario.  Tell me now so I can Google it, which isn't necessarily the most calming thing to do, but that's how I operate.  

So I didn't hear everything. I did hear that there would be no treatment, and that was confusing to me.  It's sort of a good news/bad news situation, because anytime you hear the word cancer you think, well, let's just get it.  Let's just attack it.  Let's throw everything we can at it.  But in this case it was no, we're just going to sit back and so see what happens.  So from my personality type that was a little bit hard to take.  

Andrew Schorr:

Yeah, me—well, actually I wanted to forget about it.  So if I could forget about it for an extended time, because I felt good.  So, Jackie, how do you explain to patients whether you or one of the physicians based on the test results and everything tell somebody sitting across from you they have CLL, but we're not going to do anything right now?  You've heard the same confusion that either I have had or Cathy's had.  How do you explain that to people?

Dr. Broadway:

Basically, as Phil stated, when people hear the word leukemia they immediately look at worst?case scenario, which is generally acute leukemia.  So the first thing is to help them understand the nature of the disease, the nature of their diagnosis.  And secondly, to sit down and review what those prognostic indicators mean, both the purpose of doing those and how those will determine at what point we think treatment may be indicated.  

So I—we generally spend a lot of time going over lab work and particularly the FISH test, the gene panel, and so it's important for the patient to understand there are certain prognostic factors that have a positive connotation while others suggest more aggressive disease.  So I think when you can show them something visually as you're explaining the watch and wait, I that help to calm the patient and kind of allays their fears, and they are more willing to consider watch and wait at that point.  

The other thing I think is they have to—it's very difficult for patients to differentiate CLL versus lung cancer, whatever, because, as you stated, they want to get some treatment. They want to do something right now, and they want to know that it's there.  So it is sometimes difficult to get them to understand.  Yes, you have leukemia.  No, we don't need to do anything, and it may be some time before you will need anything if you need any treatment at some point in time.  

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.