Friday, March 14, 2014

The Good Cancer

Here is a post I wrote in response to a spirited discussion in a CLL forum on the topic of how we patients are informed about our diagnosis and the unnecessary anguish called by sometimes well meaning but poorly informed and of touch physicians. As is everything in CLL, it's complicated and clear and sensitive doctor- patient communication is the starting point for a good outcome.


CLL is too often still called the "good cancer" and all of us CLL patients rightfully hate that.

No cancer is good. But perhaps the problem is more with the word cancer than the word good.

We are pleased when our doctors tell us that we have the "good" prognostic factors, knowing full well that guarantees nothing about our future.

We are happy to see a "good" lab result,  knowing full well that it might change tomorrow.

Cancer is such a loaded and malevolent word that the idea of putting something positive in front of it carries a similar horror and disbelief that would accompany  anyone uttering a phrase such as: it was only a "gentle" abuse or a "polite" hijacking. There are worse oxymorons, but I'll skip them.

Doctors want a short hand to say we have good news and bad news. There is never an excuse for poor doctor-patient communication, but we all know it is often going to be a short communication.

Many patients don't know what indolent means until well after they have been diagnosed, and to say slow growing, many patients might only hear the "growing" part especially when it is qualified with the adverb, "usually".

Let's get some perspective.

CLL is not an imminent death sentence, especially now. A significant chunk of us will never need treatment and even more of die with the disease, not from it. Nearly all of have some real time to rub our chins, plan our lives, and consider our options before any therapy is needed. And if and when treatment is eventually needed, today we have a load of non-chemo therapies available and the floodgates of less toxic choices are just starting to open. 

Maybe the cancer isn't good, but all of this is good. Very good!

Ask most patients with pancreatic cancer or MDS  or glioblastoma multiforme or metastatic ovarian cancer if they would want to trade their cancer for ours. Ask any doctor which bad news he prefer to share with his patient. It is easier to say someone has a bad cancer than a good one.

Moreover, doctors want their patients to have realistic expectations, good or bad. There are documented tragic cases of elderly patients committing suicide when they found out they had CLL because they thought it was quick death sentence. It is incumbent on any health care worker to offer comfort always and hope where hope is a real possibility.

Finding the balance is so hard.

I am trying to think here as both a doctor and as a patient. What do you think if you heard this as a starting point from your doctor?

"You have CLL, a chronic form of a blood cancer. (Pause…) While all cancer is bad, some are much worse that others. Now I want you to listen carefully to what I am about to say. (Another pause...)  While no-one knows the future, CLL is most often, not always, but most often, one of the least aggressive kinds of leukemia".

That takes longer than saying you have the "good cancer" but not too much longer. And there are a millions other ways it could be said better. And that is just the beginning of a much longer discussion to come. 

Tough stuff. Whole books on medical ethics and patient communication are written on this topic.

These and similar and usually much easier issues are what I struggled with everyday as a doctor turned patient.

Stay strong

We are in this together.


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Blogger Unknown said...

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April 26, 2014 at 11:12 PM  
Anonymous Anonymous said...

The way you described it, is so much easier to grasp. When I was told by a doc I was fortunate. I felt like being dismissed. I have nothing to complain about. So, I was scared and I was afraid to share what I was feeling. I pretty much didn't talk about it even to my family because a nurse told them something along the same lines. And sense my sister, who now past away was dx with Ovarian Cancer. at the same time. I felt very alone. I didn't know how to deal with this. I had to become my own advocate and I finally went to a research center. Which by then I needed to go into treatment. So yes. saying it's a good cancer, Some how made me less worthy of concern and reaching out to others. It's still difficult. But people are people. The One I reach out to now is God. He has giving me my peace.and hope And, Dr. Pinnella at Moffitt Cancer Center.

April 27, 2014 at 6:08 AM  

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