Dealing with uncertainty is a part of human life, and no where does that become more apparent then when living with terminal cancer. Each treatment decision takes on an exaggerated importance, and we rely upon our oncologist to provide us with information to chose the best option in light of a heck of a lot of unknowns.
In lieu of a crystal ball, oncologists speak in terms of statistics and hazard ratios. This information can only be obtained from a clinical trial. However, there is no way to know ahead of time, with complete certainty, how a particular patient will respond to each potential treatment. So oncologists say things like 50% of patients respond to this drug. Different treatment regimes are compared with each other using hazard ratios, defined as the risk or benefit of one treatment compared to another. A hazard ratio greater than one is a worse treatment; it hurts more people than the standard of care. A hazard ratio less represents an improvement to the status quo.
Hope comes from scientific innovations in the form of new drugs that are brought to market that are more effective or less toxic than older treatments. And one way to find hope is to participate in clinical trials.
However, only 5% of patients participate in clinical trials, so there is ongoing tension between academic researchers who want to enroll more patients in clinical trials and the patients themselves, who want to make treatment decisions based upon known facts rather than plunge whole-heartedly into an unknown abyss.
Researchers tout the fact that patients can get access to treatment 5-7 years before it is approved, and lament the fact that more patients aren't enrolled in trials. The sooner trials are completed, the faster promising new treatments can be developed to help patients.
Pharmaceutical companies invest large sums of money in developing a drug, and carefully design trials such that the experiment is likely to show benefit. They do this by setting strict inclusion criteria, making sure that the patients with the worst prognosis are excluded and those whose cancer has characteristics that are likely to benefit from the treatment are included. They also take a lot of extra data to help ensure that the patients who benefit the most can be identified from those who are not helped.
I'm a scientist by training and a big believer in clinical trials. I work to get more dollars invested in cancer research so that more promising treatments can be developed for people with metastatic cancer. And I've participated in three different clinical trials for cancer treatment. In other words, I've made a conscious decision to participate in clinical trials and it made sense for me to do this as early in my treatment as possible.
It isn't enough to just talk about the need for more research,
I have to contribute to the research itself.