Common sense and medical advice tells us that if you suspect you may have cancer then seek medical assistance immediately. It therefore seems inconceivable that having been told you have cancer in the form of chronic lymphocytic leukaemia (CLL), you are then told that the clinician plans to do nothing about it and adopt an approach of ‘Watch and Wait’.
The data behind this approach can by some be thought to be very reassuring, but others find the hands off approach a reason for concern. The story goes back to the mid-1980s, when studies in France and the UK showed that in early stage asymptomatic CLL, patients treated with chlorambucil or a combination of cyclophosphamide/ vincristine/prednisolone not only failed to improve survival, but in fact some patients succumbed prematurely due to infection or the development of other cancers as a result of their chemotherapy. Subsequent studies showed that up to 50% of early stage patients had not progressed to the point of the disease impacting on their lives within 10 years.
Trying to identify which of the early stage patients is likely to progress has led to the identification of endless prognostic markers, all of which suffer from the simple fact that, although they identify how a group of CLL patients will behave, they do not tell us with sufficient accuracy for an individual CLL patient to justify the implementation of therapy.
As an example, one of our own studies showed that one of the best prognostic markers was the lymphocyte doubling time (LDT) – the time it takes an individual CLL patient’s lymphocyte count to double. As 70% of patients are diagnosed by chance on a routine blood count done for another purpose, we often do not know if the patient has had CLL four weeks or 10 years! The good thing about the LDT is by comparing a single patient’s lymphocyte count with themselves, one gets a measure of the tempo of that individual patient’s CLL. Our study showed that if the LDT was less than 12 months, then you had an 87% chance of requiring treatment within the next 10 years. So, if you used a LDT of less than 12 months as the trigger to start treatment in asymptomatic early stage
patients, you would still be giving treatment to 13% of patients who would not have required treatment within 10 years, with the real risk that they may have potentially life-threatening complications from that treatment. Even in those who were destined to progress within 10 years, you would be treating many patients earlier than perhaps they needed.
Although the benefits of treatment in symptomatic and advanced stage CLL patients is undeniable, there are many downsides other than possible physical side effects from treatment:
1. Once a patient commences treatment they move from a low to a high-risk insurance group, which may well make it difficult to get credit and holiday or life insurance. I have had patients unable to get affordable medical insurance to visit their grandchildren in the USA due to the prohibitively expensive costs of insurance once they had commenced therapy.
2. CLL within a patient has usually already evolved by the time they are diagnosed. We now know within an individual patient there are many CLL clones, some of which will be more resistant to particular drugs than others. When you give treatment, you kill off the sensitive CLL clones, but that leaves you with the resistant, often more aggressive, clones which may later progress to affect a patient’s health. You are then commencing treatment but cannot use the drugs to which the clone is resistant, limiting your therapeutic options.
So why would you give an asymptomatic, early-stage CLL patient treatment when the present data shows it will be of no health benefit to the individual patient?
Things have moved on since the 1980s and some of our newer therapeutic agents are more effective and less toxic than the chemotherapies used then. Studies are being developed to look again at whether early therapeutic intervention in early stage CLL patients would prove to be beneficial in the long run. However, if one takes early stage asymptomatic CLL patients and tries to stratify them according to whatever prognostic systems one chose to use, one would probably need a study which would take over 10 years to tell us whether a particular treatment was better than ‘Watch and Wait’. So, we are not going to know anytime soon!
Also, we don’t have data that the newer, less toxic agents are safe if taken for 10 years or more. They may be less likely to cause infection or other cancers, but we already know some of the newer agents are associated with other side effects such as irregular heart rhythms, hypertension and indeed possibly infection. They are also not cheap and may have financial toxicity for the payer!
So, ‘Watch and Wait’ in reality is good news for patients, but the negative impact patients may feel often surrounds the way this information is given. There have been many studies assessing the impact of a diagnosis of early stage CLL on patients. Clearly any diagnosis of any cancer has the potential to have a major impact on one’s wellbeing and possibly life.
Thoughts about one’s risk of progression, potential side effects of treatments, employability, finances and impacts on family and other loved ones often results in anxiety, which can lead to depression, and which then further impacts on one’s own wellbeing. We know phrases used by doctors such as CLL is a good cancer, if I had cancer this is the one I would choose, don’t worry about your CLL!, do not provide reassurance to patients, but that they actually add to their anxiety and negative experiences from the diagnosis.
If a diagnosis of ‘Watch and Wait’ is causing you anxiety, then your CLL is impacting on your wellbeing. Clearly this is most unwelcome and, for the overwhelming majority of patients, completely unnecessary and you should seek help. The options include going back to your doctor to discuss matters further, reading written literature, joining a patient self-support group, looking on the internet for advice, or taking your CLL diagnosis head on and doing something positive. We often take our health and life in general for granted.
So, if you are an early stage asymptomatic CLL patient, the advice is to stop smoking, get vaccinated, try and avoid people with active infections, lose weight if you have ‘love handles’ and live as healthy a life as possible. This will not only stand you in good stead if you ever require treatment in the future, but also improve both your daily physical and mental wellbeing by taking an active role in managing your illness. Knowledge is power! By being more knowledgeable about early stage CLL, the more empowered and able to thrive you will be. Recent data suggests that the overwhelming majority of newly diagnosed early stage asymptomatic CLL patients will have a normal life expectancy with or without treatment. So remember, don’t blow your money as you will almost certainly need it for a very long time to come!
Watch and Wait: A Revolving Door
Nick York, our Campaigns and Advocacy Officer, is here to give a patient’s perspective of Watch and Wait.
Diagnosis, shock, disbelief, and then “watch and wait”
Adjusting to a diagnosis of chronic lymphocytic leukaemia (CLL) was not easy. I will never forget that knot it created in my stomach, with a feeling I was wading in treacle on a foggy day. It was an all–consuming fear and this took a long time to subside.
‘Just get it out’ was my first thought at diagnosis. So, to then learn that the type of leukaemia I have is incurable, but essentially treatable, requiring several phases of treatment through the years, was hard to swallow. To then be told nothing is going to be done – “come back in 30 days” – seemed counterintuitive.
I had so many questions. What should I tell my family? How long have I got?
Understanding and “watch and worry”
I seem to recall the first lesson that helped me was learning that the less frequent the ‘watch and wait’ appointments were, the more settled the disease progression was. Until then I was worrying while watching. Time is the greatest prognosticator; the longer you are monitored the clearer the picture becomes. You start to gain confidence in your own skin again.
“Watch and wait” can be a lonely and lengthy journey. Access to appropriate information when you want it is important, but this is not always straight forward. When I was diagnosed around seven years ago, there was little available and I struggled to find answers. Additionally, gaining access to a key worker regularly is not as easy as it should be.
Connecting with charities and others who understand can make a world of difference, but there are always going to be those moments when worry bubbles back up. For example, when you experience new symptoms or prepare for your monitoring visit. It can be hard to stop these thoughts and remain positive.
Living while watching but not waiting
I wish I had a pound for every time someone told me, “you look so well”. It would appear a new healthy lifestyle and use of coping strategies made me look like there was nothing wrong, when all the time inside the disease was growing and spreading and symptoms were worsening.
During this time, “watch and wait” had become an old friend. No longer was I wanting treatment, but wished to enjoy every moment of “watch and wait”. Life was beginning again, even if a little restricted at times.
Still watching but no time left for waiting
When my consultant suggested it was time to consider treatment, this hit me like a sledgehammer! I knew it was coming, as my counts and symptoms had slowly worsened over the years, but now I didn’t want treatment. Watch and wait seemed much more preferable to me now.
Treatment, however, was not a choice that I could delay any longer and, after seven long years, it was time for chemotherapy. Reflecting at that time, I was now glad of “watch and wait”, for it gave me time to live a little, learn a lot and prepare.
After treatment and it all seems to start over again
As I start out on the “watch and wait” journey for the second time, instead of walking blind, this time I have a prewritten guide. I know what to expect and I feel able to do more living and less worrying!