The Force

Remember Newton’s First Law of Inertia? If not, here’s the description from Britannica.com

“Newton’s first law states that if a body is at rest or moving at a constant speed in a straight line, it will remain at rest or keep moving in a straight line at constant speed unless it is acted upon by a force.”

This law has relevance to my experience with the treatment of metastatic breast cancer (MBC). I was diagnosed with MBC in late 2009, five years after my diagnosis and treatment for Stage IIa breast cancer. I was 42.

After two progressions of the cancer in less than four years, it seemed I was on a trajectory that was headed nowhere good. I wanted to postpone starting chemotherapy as long as possible. I still had some living to do. My first inquiries to my oncologist about clinical trials came up empty because there was nothing available locally. I needed to look further afield, which meant taking on a deeper level of research: learning about advances through patient webinars and medical journals, searching the data base at clinical trials.gov, building a spreadsheet of trial ideas, and reaching out to trial investigators. This effort took time. I discovered I was excluded from a lot of promising trials because of previous treatments. In the meantime, my cancer progressed another time, and I started line of treatment number four— my first chemotherapy in the MBC setting.

Finally, a serendipitous posting on a patient discussion board helped me find (and enroll) in an out-of-country clinical trial just as I progressed on this fourth line of treatment after only six months. This clinical trial/fifth line of treatment worked for two years — a game changer. It gave me access to an emerging drug that I would never have had if I had stayed only on the conventional treatment path. Since then, I have been in six other clinical trials. Some worked, and some didn’t, but they have given me more time and a generally better quality of life.

It took the outside “force” of self-advocacy to change the trajectory of my disease progression — and, of course, the good fortune that the new drugs worked for a bit. However, one cannot be part of the MBC community for as long as I have without being laid low by the continual loss of friends who also needed new options but didn’t have the financial resources, time, health, energy, and/or caregiver support to access and travel to clinical trials.

My question now is how to help others to benefit from clinical trials. I try to encourage self-advocacy, knowing that it can be a tough slog. Perseverance and resilience are required. I also joined the Clinical Trials Ontario’s College of Lived Experience. Recently, with several of my co-members, I was part of a team that conducted a survey on patient and public perceptions regarding decentralized and hybrid clinical trials. The research has now been published (https://rdcu.be/dLTRd) “Patient and Public Perceptions in Canada About Decentralized and Hybrid Clinical Trials: It’s About Time We Bring Trials to People.”

Our survey and the results are just a first step, but they show that people are open to the idea of decentralized and hybrid trials, especially when it would provide more options. Removing geographic, time, and financial barriers could help enrollment and increase the cross section of patients. Our next steps as a group are to continue to communicate this message to sponsors, researchers, regulators, and health care professionals.

Sometimes, it seems in breast cancer advocacy that the sickest — those living with metastasis — are overlooked in the dialogue and in priority settings. To keep motivated, I have needed to focus. My goals remain to support my fellow patients living with MBC in self-advocacy and, as part of this larger group, help be the force to change outcomes by making clinical trials more accessible.

Rethink is honoured to be the guest editor for Wildfire Magazine’s annual Metastatic Breast Cancer issue focusing on Advocacy.

^{This piece has been republished with permission from WILDFIRE Magazine, the “MBC Advocacy” issue issue, published originally October 19, 2024. More information available at  wildfirecommunity.org} 

^{WILDFIRE Magazine is the only magazine for young women survivors and fighters of breast cancer under 45 years old. Headquartered in Santa Cruz, California, WILDFIRE is a beautiful, story-based bi-monthly magazine published on different themes relevant to young women survivors, from stage 0 to stage IV. Beautiful and ad-free! Visit  wildfirecommunity.org for more info.}