Born a “sci-fi” fan, I can clearly remember years ago watching movies with all sorts of futuristic gadgets and gizmos that made amazing things happen. If you believed it all then, we would someday be traveling to other planets, extending our life expectancy, producing fuel from readily available resources, doing surgery without large incisions and with amazingly short recovery times…and sure enough, the future became the present and many of these far-fetched things have become our reality! In that mix, there was always talk of scientists somehow unlocking the mysteries of human development, gaining an understanding of what makes each of us unique, and figuring out why some of us get sick and others don’t. Then the Human Genome Project (HGP) happened. Completed in April 2003, the HGP gave us the ability, for the first time, to read nature’s complete genetic blueprint for building a human being.
When we consider that one of the greatest challenges medical science has today is to cure cancer, it turns out that what the overall human genomic blueprint is – and how our individual gene “map” differs from the norm – has become critical to the development of treatments for so many diseases – including cancer. We cannot as patients, survivors, and care partners, afford not to be informed about what this all means.
You are likely hearing all sorts of new terms being thrown about in the world of cancer diagnosis and treatment… “genomic testing,” “biomarkers,” “mapping your genes,” “genetic aberrations,” or “chromosomal deletions” …and the other big one – Precision Medicine. If you think about this, Precision means to do something “exact and accurate” – to deliver medicine or treatment that is exactly what you or a loved one needs to get well. That is what medical science is focused on now and it is all tied to what each individual’s “map” looks like. This is the very reason we all need to do our homework about the developments in this field, take note of who the leading researchers are and where they are conducting trials to help formulate more “precise” treatments for each type of cancer and also look for individual variances that might affect how well the treatment will work.
As a care partner to my life partner, Andrew, who is living with two types of blood cancers, I am forever grateful that through educating ourselves and helping educate and empower others like us to stay on top of leading medical research and treatment development, Andrew has had lots of testing, participated in clinical trials, and now takes medication that allows him to lead an active life. It has taken time, study, outreach to experts and other patients who have come before us, not being afraid to ask questions (NO questions are stupid), and always viewing treatment decisions as a collaboration with Andrew’s medical team. This field is evolving so rapidly that one must assume that while our doctors do their homework, we need to do ours as well.
One way Andrew and I have chosen to support the education and empowerment of patients and care partners in the pursuit of “genomic knowhow” is to get involved with a pilot project called Precision Medicine for Me. This project is a collaboration between patient advocates, pharmaceutical companies, clinical trial-focused groups, and many others who have together created a portal site for lung cancer patients in search of the latest information about precision testing, potential trials, and leading-edge treatments for their condition. If this is a successful venture – and we sure hope it will be – we will replicate it for other cancer types. We include information about the latest research and treatments, explain about genomic testing, help identify appropriate clinical trials – and surface the voices of lung cancer patients who have benefited from “doing their homework.” Have a look and tell me what you think. It is exciting that that what seemed a universe away years ago is becoming our today.
I wish you a healthy and empowered journey of learning!
Esther Schorr is a Co-founder of Patient Power, as well as an online host, a caregiver, and a patient advocate. You can read more about her here.