iMedicine: The Quest For Good, Solid Data

The mesothelioma client's first step is to hop on the Internet, where his beleaguered boat is quite often capsized by a monster wave of information, pseudo-information, and misinformation. His first task is to begin ruling out bad options like the unregulated nostrums in the Bahamas and Tijuana.

However much time this takes, and it usually involves one or more relatives devoting all of their spare time to online research, the client finally concludes that although there is no single option, surgery is most often the bedrock of a successful mesothelioma treatment plan. The most recent study examining mesothelioma survival reviewed 939 cases and showed that surgery plus other treatments is associated with a median survival of 20 months. [1] And although there is no consensus on the best way to treat mesothelioma, the International Association for the Study of Lung Cancer makes clear that the goal is maximal tumor debulking in patients who are candidates for surgery. [2] That is, leave no visible chunks of tumor behind. There was no agreement among the experts, however, about the optimal type of surgery, the need for radiation therapy, or the need for combined modality treatment incorporating chemotherapy. [3]

So the one thing we think we know-that surgery extends survival-we don't really know. Flaws in past data and the development of new techniques mean that the intuitive choice of surgery-cut the tumor out-won't be validated until a true randomized prospective trial has been done. Just such a trial is underway in the United Kingdom, although even this groundbreaking study will only test the extra-pleural pneumonectomy (EPP) and not the lung-sparing pleurectomy / decortication( PD). [4]

Until those results are in, how is a patient to decide, as the clock ticks and water fills the engine room?

Choices: the good, the bad, and the ugly

Mesothelioma defies quick fixes. It has a long incubation period, its symptoms are often interpreted as pneumonia, it's a soft and diffuse tissue, the diagnosis is not easy, the time from diagnosis to treatment is harrowingly short, it commonly afflicts elderly patients in their 70's and 80's, and it is associated with co-morbidity factors such as heart and lung disease that make aggressive treatment risky at best.

The medical seascape reflects this violent storm of circumstances, as doctors vacillate between two extremes. Some surrender to nihilism and counsel that the ship is quite literally sunk. Others subscribe to the radical interventions of slash, burn, and poison, otherwise known as surgery, radiation, and chemotherapy. Most agree that, left untreated, the patient will almost certainly die in a median of nine months. [5]

On top of that, for many patients, the first concern is insurance. Will their HMO or Medicare cover a non-standardized series of treatment by out-of-plan doctors? Most won't. Many doctors will tell a patient that they don't need to go to UCLA or Brigham and Women's Hospital in Boston because they have a perfectly good thoracic surgeon in the neighborhood who, by the way, has only done one or two, if any, radical surgeries in his entire career.

Chart: Best web resources for clinical trials

*** POSTED ON FEBRUARY 7, 2008 ***