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 markers, 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 a “gentle” case of child abuse.
There are even worse oxymorons, but I’ll skip them.
So why do we so often hear CLL addressed as the “good” cancer.
Doctors want a short hand to share the good and bad news.
There is never an excuse for poor communication, but we all know that most doctor-patient communication is going to be brief.
Let’s say the doc says it’s an indolent cancer.
What do you think the patient hears: CANCER!
Many patients don’t know that indolent means slow growing until well after they have been diagnosed, and to simply say slow growing, many of us patients might only hear the “growing” part especially when it is qualified with the adverb, “usually”.
So 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.
The large CLL8 study published in Blood confirms that there is significant group of us with a certain type of CLL that is “…very low-risk, harboring del13q14 only, whose 10-year survival (69.3%) did not significantly differ from a matched general population.”
What this large study is saying loudly and clearly is that a subset of us with CLL will have the same life expectancy as those without CLL. That is very good news.
Moreover 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 very effective traditional and non-chemo therapies available and the floodgates of newer less toxic and more potent choices are just starting to open.
Maybe the cancer itself isn’t good, but all of this news is good. Very good!
Just ask most patients with pancreatic cancer or MDS or glioblastoma multiforme or metastatic ovarian cancer if they would want to trade their cancers for ours.
Ask any doctor which cancer diagnosis that he prefers to share with his patient.
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 that balance is often difficult.
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 than 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.
To be sure that I was clear in what I said, I would like you to repeat to me what I just explained.”
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 even 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.
I struggled daily as a doctor turned CLL patient with these and similar issues and welcome your insights, comments, and experience.
Brian Koffman 2/27/15