Another Side of Story of Clinical Trials

Although I truly believe that clinical trials offer prolonged lives, I always have some doubts about clinical trials. After all, it's an experimental study. I wrote an article posted on LungCancer.net last October: What Is Really Involved in Clinical Trials? In my article, based on my lung cancer friends' experiences, I detailed some challenges that patients endured, such as physical pain, severe allergic reactions, especially mental health issues. Despite the ordeal, my friends still wanted to be involved in clinical trials. I started to have some realizations that indeed, "Clinical Trials Saves Lives."

In that article, I wrote the "front side" story of clinical trials. Today I'll talk about the "backend" story, i.e., what happened and, more importantly, what should we do when the clinical trials fail the patients, i.e., the clinical trials are terminated.

A patient experience

I have been an advocate for LungCancer.net for two years. Last year, a patient wrote her experience with the clinical trial. It made me extremely upset. The patient wrote that the doctor ended her clinical trial, and she didn't know why. For a while, nobody informed the patient what the next step was. The original oncologist didn’t treat her for long, and she entered the clinical trial directly. This patient felt extremely scared and devastated.

This made me disheartening. As we, the lung cancer patients who have just been diagnosed with lung cancer, experience extremely high stress, almost to the panic state. We likely can't comprehend our treatment plan for a clinical trial or a typical routine cancer-treating procedure. Quite often we need double or triple times to ensure from the doctors that a good treatment plan is in place. Having the treatment elapses, even for a short time, we experience an extremely high-stress level. When the doctors encourage the patients to join the clinical trials, they should have thought about the patient's needs after clinical trials. I believe such a patient case is not isolated and needs attention.

Better communication is imperative

The cases that the clinical trials failed the patients and their trials stopped is not rare. The patients are incredibly nervous about the next steps when it happens. The research from the University of Pennsylvania showed that "...patients often felt disappointed or that there was no "clear path forward" after withdrawal.”¹

Having the patients discontinue the clinical trials, but the following treatment elapsed is unacceptable and extremely upsetting because these patients are not only doing the trials just for themselves, but for other patients and for science as well. Indeed, "...If a patient starts the clinical trial right away, the patients put a lot of trust in our doctors, and hope the outcome is better or at least as good as the standard treatment. Therefore, If the clinical trials fail the patients, it's the last thing that giving the patients a proper treatment plan is the least we can do (i.e., the doctors own to those patients)."¹

Before the clinical trials start, the doctors should gather more information on what cancer patients need before, in the middle, and post-trial. "Recent evidence suggests that there is little discussion between care providers and patients with cancer who are receiving treatment as part of a clinical trial about what the patients' immediate needs will be after the trial has ended."¹

I learn that, from the patients’ side, we must advocate for ourselves and take the matter into our own hands. We should keep in touch with the primary oncologist because the clinical trials don't last forever, and clinical trials may fail. So, the patients withdrawn from a trial for any reason should speak with their primary oncologist about their medical needs and how they can be supported through the transitional period.

Overall, the study from the University of Pennsylvania showed that "...better communication is needed between physicians and patients with cancer during clinical trials so that patients are better prepared for life after the clinical trial is over."¹

Personal reflections

As a lung cancer patient, I understand that clinical trials save lives, and by participating in the clinical trials, patients are offered an opportunity to survive longer. However, we don't know much about those patients who withdrew from the clinical trial. This situation is frustrating for the patients, which demands further research on it. I also think that we have to advocate for ourselves before, during, and after clinical trials.