Food for thought #2 - Clinical trials, should the discussion happen early or late?

Why do you think there is such a mysterious cloud around the discussion of clinical trials?

As you might know I successfully entered a clinical trial 12 weeks after my metastatic diagnosis in 2017. A biopsy confirmed that TNBC (Triple Negative Breast Cancer) had returned (tumor sites were in my lungs, spine, ribs and pelvis). In addition, the biopsy also confirmed that it was the same exact TNBC that I had had in my primary stage (the cancer had not changed to hormone positive). I was Stage IV Metastatic TNBC.

Before my diagnosis was confirmed, I set upon doing some serious research. In order for me to satisfy my unwavering quest to make an informed decision, based specifically on my case and scientific info, I was going to have to do some serious homework. Completing an exhaustive search trying to piece together a cohesive action plan, I had enough information to make an informed decision. My info came from:

  • 4 oncology cancer researchers (2 before my MTNBC diagnosis and 2 after)

  • 8 to 12 hours a day pouring over medical journals, online chat rooms, magazine articles, research studies, white papers and online support groups

  • 2 discussions from peers who had attempted or successfully entered clinical trials and how did they go about planning (one discussion happened online and one over lunch in person)

  • Maximizing all the scientific tools I had to assist in making a decision. The tools included CT Scan, Biopsy, and Genomc Testing).

But after all this work, mapping out a plan, I still had to bring up the conversation of a clinical trial with my original breast oncologist. I can remember the frustration when I brought up the idea of participating in a clinical trial to my original oncologist, and her initial dismissal of the idea. I just wanted to discuss all my options, weigh one against the other and collaborate with my oncologist to make an informed choice. It was not until she realized during my biopsy confirmation visit that my original oncologist realize that I had been consulting with TNBC research oncologist who did not think my theory of participating in a clinical trial was so far fetched. Only then did my original oncologist jump on board to suggest that it was a possibility. By then the damage had been done, and our relationship never recovered. Subsequently I divorced my original oncology team.

So, why is the conversation of clinical trial participation so difficult to have? Really? Why is the conversation of clinical trials, not had at the beginning of treatment planning for many patients faced with the challenge of navigating a cancer diagnosis? Especially a late stage cancer diagnosis? A number of reasons pop into my mind:

  • Doctor Bias - It’s a real thing. I know because I experienced it. My words went unheard, unvalued and my opinion was discounted.

  • Uneducated Patients - a patient may not be aware of what a clinical trial is and that it is an option

  • Clinical Trial Public Perception and Bias - the atrocities that happened during the Tuskegee study and other study incidence’s are still fresh in minds of a patients and caregivers. The historical resistance and distrust are common feelings that exist and should be recognized.

  • No wide held discussion’s on safety measures put into place by medical institutions and government to ensure patient safety. I had no idea that an Institutional Review Board (IRB) even existed. The IRB is the main body of research supervision.

  • Community Hospital Disadvantage - a majority of clinical trials take place at larger teaching institutions. Does this fact lead to doctors and patients in the community setting having less opportunities to discuss clinical trials?

So many questions. I understand that clinical trials are not always an option. patients have a right not to participate, and oncologist’s may have better options that include targeted treatments that don’t require entering a clinical trial. But I what if the discussion happened earlier and the options were weighed? Would that make for better communication between doctor and patient?