Living with a CLL diagnosis, where there's the unfortunate expectation that your health has entered inevitable decline*, its easy to fall into the trap of blaming every new health concern on your CLL. Unfortunately, we are all at the mercy of the regular health worries that come with living and growing older as much as anyone else.
Tammy Hoffmann, A/Prof Clinical Epidemiology, Bond University; NHMRC Research Fellow at The University of Queensland and Chris Del Mar, Professor of Public Health at Bond University, Australia, explain why sometimes having medical tests to find the cause of what now ails you may not be good for you:
While initially using the example of X-ray and CT scans, their article goes on to explain the 'Choosing Wisely campaign, which started in the USA in 2012 and has now come to Australia. I particularly like what they said at the end of their article:
"The Choosing Wisely lists are not about identifying exclusions and services that should never be provided, but rather they are about encouraging conversations. Every patient is different. Decisions about what is best for each person should ideally be made collaboratively between clinicians and patients.
This approach – talking with patients about the problem so they can appreciate the futility of the intervention – is particularly attractive. Compared to a top-down process that might be perceived as rationing and cost-cutting, this approach might achieve better acceptance by the community.
But this requires clinicians to be willing to engage in shared decision-making – a consultation process where a clinician and patient jointly participate in making a decision, having discussed the options and their benefits and harms, and having considered the patient’s values, preferences and circumstances."
It is my hope that this community will provide each of you with the knowledge that you need, so that you can have a conversation with your medical team about the importance of having a particular test when they (often with limited knowledge of CLL) may try to tell you otherwise. After all, we want such decisions to be informed decisions for both parties.
* Hopefully you'll find lots on this site to dissuade you of the opinion that your health can only get worse with a CLL diagnosis. We do have to be more careful
Photo: Naked Ladies (because the bulbs flower without leaves), also known as Easter Lilies (for their appearance around Easter) brightening up the rather bare summer garden.