1991 Dana-Farber Cancer Institute, Boston, MA
“There is a brand new option,” said my Harvard hematologist when I was first diagnosed with Chronic Lymphocytic Leukemia at 28 years young. “It’s called watchful waiting. We wait until you get sick, then we bombard the leukemia with various chemotherapy agents and steroids.”
“You’ve got to be kidding,” I said. “I’m to wait around and do nothing until I fall ill?”
“Just live your life; there’s nothing you can do that will impact the course of this disease. It’s genetic. It’s not your fault.” His intended assurance did not sit well with me.
It was made clear to me at the onset that I would be managed with a palliative care approach. I was devastated.
The concept of just watching and waiting until ‘the enemy was ready to slay me’, then ‘go to war’, seemed a little antiquated. (BTW, war metaphors about cancer really suck.)
Wasn’t there something more practical and preemptive? Actually, no. There wasn’t anything more practical or preemptive, given the efficaciousness and durability of therapy or, more accurately, the lack thereof.
This ‘new’ clinical management option of watchful waiting created a wave of concern that I knew could become chronic anxiety. I would later learn that this concept was emotionally damaging to many diagnosed with CLL / SLL.
“You have the good cancer” and other unhelpful pronouncements
Many of those diagnosed do not find it comforting to hear, “You have the good cancer.” Yes, this phrase is still uttered as some form of well-intentioned consolation, not to mention that statement often arrives without the benefit of an accurate prognosis. It is uninformed and counterproductive at best and disingenuous at worst.
Being told “you don’t need to change anything” or “nothing you do will impact the underlying lymphoproliferative disorder you are hosting” is misleading; there are ways and means for each of us to be proactive in our own care. Responsive rather than reactive.
The Advent of Proactive Observation
At diagnosis, as much as my forward-leaning type-A personality wanted to go for the most aggressive treatment, I chose to go beyond watchful waiting and coined the term proactive observation.
Proactive observation was a necessary upgrade of watchful waiting because it meant I was taking some control—I was involved in the management of my own care. I was proactively learning, adjusting my lifestyle and behavior, and being vigilant… because my life was worth more than accepting a “watchful wait.” I wrote about focusing on the CLL host here.
Decades later, as a professional cancer coach who has worked with over 1000 individuals living with CLL / SLL, I constantly hear about the struggle of folks being left to their own devices to figure out what they should be learning and doing in between their quarterly or semi-annual clinical appointments.
This week I met with a 90 year-young woman named Sarah. Cognitively, she is as sharp as they come. She eats well and exercises daily. Overall, she is in great shape. But she’s been in a state of chronic anxiety since her diagnosis seven years ago.
Sarah has the most favorable CLL prognostication factors, and her blood counts have barely budged over the years. It is doubtful she will ever succumb to CLL. Yet she constantly ruminates on her diagnosis. She’s literally losing sleep over this. There are significant unmet psychosocial support and educational needs for the many Sarahs who have been asked to watchfully wait.
Watchful waiting is emotionally challenging. Unfortunately, those living with a CLL / SLL diagnosis can often have their emotional needs neglected by their primary care physician and hematologist (evidenced by stats in the addendum of this essay).
Meanwhile, what I know is this:
Becoming the healthiest individual who happens to be hosting a CLL / SLL diagnosis is profoundly beneficial: emotionally, psychologically, and physically.
Those hosting CLL / SLL have precisely zero to lose by strengthening their immune function and increasing their resiliency. Forget watchful waiting—this doesn’t mean ignoring the doctors. Engage in proactive observation. Full stop.
The Proactive Observation Path Needs More Physician Support
Doctors are trained in the physical aspects of treatment, not necessarily the emotional ones for those in watchful waiting.
But a CLL / SLL diagnosis doesn’t just change a life; it can take over a life. It can dominate one’s every thought. As a result, many of us could greatly benefit from early professional medical support that, rather than focusing on the ‘quiet’ underlying leukemia, concentrates on the emotional trauma that can be the more profound and troubling chronic condition.
For someone in watchful waiting, every ache, pain, night sweat, cold, or fever immediately triggers a response: “Is it the CLL?” The emotional impact is real and, for many, triggers an underlying level of chronic anxiety. This was me for the first-decade post-diagnosis.
Informed Patients = Clarity of Journey
I see way too many hematologists opting not to do prognostication testing. We are fortunate that in the U.S., these tests are considered clinically indicated and covered by insurance and Medicare. In Canada, Europe, and many other countries, they are not. It’s an out-of-pocket expense for those who want to receive an accurate prognosis.
For those who say that this process is only meaningful prior to commencement of treatment, I posit that most folks living with a cancer diagnosis deserve to know how the disease they are hosting may manifest over time. It adds perspective; it helps with important life planning, and most people do not want to be kept in the dark.
Expert academic CLL / SLL clinician-researchers already stratify their CLL / SLL patient panels, especially when creating research study designs. And they communicate using terms such as favorable, mixed, and unfavorable prognoses based on a group of markers and genetically-informed prognostication factors.
However, too often, neither community hematologists nor primary care physicians fully explain and educate their patients regarding the various subsets of CLL.
CLL Subtypes Need to be Reclassified
CLL has almost as many flavors as Baskin Robbins. CLL Society likes to say if you know one CLL patient, you know one CLL patient. We are all different.
We must reclassify CLL Subtypes in such a way that is most helpful for physicians and patients.
Subtypes such as:
- slow-progressing features (ex., mutated IGHV, 13q14 deletion);
- mixed sets of prognostication factors indicating moderate forms of the disease (ex., unmutated IGHV, deletion 13Q14);
- the most challenging and aggressive forms (ex., unmutated IGHV; deletion 17P, NOTCH1).
Yes, regardless of genetics, ‘proactive observation’ is currently the best course until, if, or when treatment is necessary as many patients, regardless of their prognostic markers, will never need treatment. Defining CLL subsets with useful, consistent vernacular for patients to truly understand and better plan for—perhaps combined with other risk factors to complete the current picture for each patient—seems the most logical approach moving forward.
Who Will Step Up to Meet this Unmet Need?
Who is the academic CLL / SLL expert or team willing to tackle this critical issue? Who will lead this change in best practices for patient communications? Are changes in CLL / SLL care guidelines appropriate?
Perhaps my friends at the CLL Society are best positioned to lead this charge in developing this new, more valuable, and actionable guiding framework for those hosting CLL / SLL?
In Conclusion
It’s a sad state of affairs when a patient goes out into the world with little information and an all-consuming emotional burden.
It is essential for clinicians to have meaningful conversations with their patients and for those professionals to become better listeners. They need to comprehend how watchful waiting will affect a patient’s emotional health and be quick to refer to those professionals best positioned to support the unmet needs of this portion of their patient panel. If this guidance is not available from a patient’s hematologist or primary caregiver, then the patient—or someone acting on behalf of the patient—should proactively seek help from a psychosocial or psycho-oncology expert.
One way to ensure patients’ needs are met is to reclassify the various subsets of Chronic Lymphocytic Leukemia to help set expectations and mitigate patient anxiety. In addition, to offer more support to those diagnosed with CLL / SLL, we have to step up and educate and advocate for a change from the directive of watchful waiting to the more valuable, patient-empowered approach called proactive observation.
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Addendum: Surveys and Stats
Liam Davenport’s article from April 2021 shares findings from Professor Chris Fegan, director, School of Medicine, and consultant haematologist, Cardiff University.
Davenport points out in the piece that Professor Fagen infers that watch and wait equate to ‘doesn’t need therapy. Fagen advocates dropping the term CLL and cites the reasons for the diagnostic criteria and the propensity for that criterion to warrant the accepted standard of ‘watchful waiting.’ Such a paradigm and clinical change would focus the attention needed in proactive treatment.
Two significant surveys are noted in the article:
A 2018 survey of leukemia patients reported that 32% of patients had no symptoms before visiting their primary care physician—not aware anything was wrong with their health. Therefore, they were blindsided by the news, after which they were sent on their way—seemingly with no follow-up instructions for support.
The same survey indicated that patients with a CLL diagnosis were merely placed on or referred to on a ‘non-urgent pathway’ by their primary care provider.
Another survey indicated that three-quarters of about 1152 CLL patients were on some kind of watch and wait. The rest were to receive immediate treatment. Of that, three-quarters, under a third (less than 300) were offered access to a clinical nurse specialist—not all could, would, or were able to make contact. The remaining 600 were left to watch and wait without support. The participants were given, at best, some written information. Again, those patients were sent out the door, some with printed material, of which only half said they understood it. Ultimately the majority of those watchers and waiters were left to handle their concerns and levels of devastation over their diagnosis.
Glenn Sabin, a 30-year CLL thriver, is a writer, author, and longtime cancer coach. He is a recognized national expert in the area of lifestyle and integrative oncology and its critical role for those living with cancer.
