What has got the CLL world talking at the moment is a paper in Cancer from the Mayo Clinic which suggests that patients treated by the CLL team live almost 2 years longer than those treated by teams at the Mayo that are expert in other hematological conditions like myeloma, lymphoma or MDS. Why should this be?
This was not a randomized prospective trial so the obvious explanation would be that the groups were not well matched. However a multivariate analysis of known prognostic factors such as age, stage, sex, and total white count still leaves the expertise of the doctor as a significant factor.
The most striking difference between the two groups was that the experts kept the patients on watch and wait longer. Once treatment starts then hazards are introduced. The patient is more likely to develop infections, autoimmunity, extra chromosomal abnormalities, pancytopenia, Richter's transformation and MDS. The commonest mistake I see made by general oncologists is to treat just because of a high white count - not an indication in the international guidelines.
Non-experts are much less likely to request biological prognostic markers; so much so that it was not possible to separate the two groups of patients according to these parameters. Even the cheap Beta-2M test was not done sufficiently frequently, so it was more likely ignorance rather than expense that was the deterrent.
Non-experts were much less likely to enter patients into clinical trials even though it is well known that patients entered into trials fare better tan those treated according to physicians' choice.
Non-experts were more likely to choose chlorambucil or rituximab alone than a purine analog combination. Now I think there is a place for chlorambucil alone in the right patient, especially at the right dose, but this should be chosen from a position of expertise rather than ignorance.
So I find the paper believable. It is not necessary to be treated by an expert - their fellows do even better than they do, but make use of an experts expertise.
This is quite frightening. For us in the UK, treated under the NHS, we don't have much choice who treats us. I don't even know if the hospital doctor I see is an "expert" in CLL or not. I suppose it's all the more up to me to get knowledgeable about different treatments, but it does seem very complicated to a newcomer on the scene.
ReplyDeletePaula...this is true for anyone anywhere in the world, actually, and yes, do not doubt all doctors but if you can, do try to learn where (or whom) to put your belief in...for better or for worse...you should be commended for your courage...
ReplyDeleteas a doctor myself, as a CLL patient I have trusted my general heme-onc, BUT I keep up with the literature and get advice by email from some of the experts, the good Doctor here included....I see a general heme-onc at a second rate med school in Philadelphia while my own alma mater has a CLL expert, whose team did that great study on genetically modified T cells, I am once again in watch and wait but may seek a second opinoin there...
ReplyDeleteBonjour
ReplyDeleteHere in france CLL is classified "ALD" "affection de longue dureé" may be translated long term disease. I am followed by an haematolist, and in case of alarming signal in my situation it is reported in a RCP "Réunion de concertation pluridisciplinaire" that will give recommendation.
regards
Herve