Catherine Brennan Williams, on the importance of #Stage4Lifer self-advocacy and advocacy for MBC needs.
As young women, we are taught to listen to our healthcare providers and trust their judgment. We don’t want to be rude or question our doctors, yet when something doesn’t feel right, it’s imperative that we listen to ourselves. We need to know our bodies and act quickly when we think something is wrong because young women can and do get breast cancer.
I know this all too well because my very first mammogram at the age of 40 revealed breast cancer and I learned shortly after, that it had also metastasized to my bones and liver. I was still young and healthy, I thought, yet now I had a frightening new reality: metastatic breast cancer, for which there is no cure.
A friend of my sister who also has MBC gave me some very good advice right after my diagnosis – you have to be your own advocate. This seems so obvious, yet for me it hadn’t been. I remember thinking to myself—whatever happens, I don’t want this to happen to anyone else. I need to DO SOMETHING. I would do everything I could to be a part of my own healthcare team, advocate for myself, and even advocate for others.
This realization led me on a path to self-advocacy. Advocating for yourself is, in my opinion, the most important type of advocacy. If we are not working with our healthcare team, participating in major decisions as an educated person who is current on the latest research, trends, and clinical trials, then who is? Our oncologists treat hundreds of patients and we are all very different. What works for me, might not work for others and vice versa. Keeping track of your own treatment and side effects, writing questions in a notebook for your next doctor visit, and saving copies of your medical records are all integral to advocating for yourself and being a member of your own care team.
I was fortunate enough to meet a metastatic patient advocate who introduced me to the world of patient advocacy—advocating for others, the community, for researchers, and organizations. She encouraged me to apply for Living Beyond Breast Cancer’s Hear My Voice: Metastatic Breast Cancer Program. This training introduced me to other advocates, types of advocacy, and the many opportunities available for patient advocates. I had lost my career because of my diagnosis, so being able to channel my energy into something I was truly passionate about was like a new lease on life. I was able to bring my professional skills to the table and utilize my experience to help end this disease.
With some training and a new focus, I gained confidence to approach various organizations to work together on advocacy projects. This month, I am organizing the first-ever tent for MBC education at the Susan G. Komen Race for the Cure in San Francisco. This partnership will help educate the public and raise much-needed awareness about Stage IV breast cancer— a diagnosis many people, even other survivors, are uninformed about.
I am working with newly diagnosed women through my local support group—something that’s extremely important as I know the isolation and sadness that this diagnosis brings. My support group, established over 8 years ago for metastatic women diagnosed at age 45 or under, was there for me when no one else could truly understand my situation. I learned so much from them—about treatments and disease-related information—but also about living my life to the fullest, no matter how much time I have left. I remember meeting Jane, a woman who had been living with my exact diagnosis for almost 10 years. It was truly life-changing for me. She was working and very active, riding road bikes on the weekends for 50-75 miles at a time! As an active person, this was exciting. I knew that I had to keep doing the things I loved and that they may even help my prognosis. Because of these women, I began to feel that I still had a life to live—and it could even be a great one.
Other advocacy efforts I’ve become involved in include chairing the breast cancer team for the California Dialogue on Cancer, a CDC sponsored program aimed at reducing incidence rates and deaths from cancer in the state. I got involved with this program through a friend and when no one was willing to chair the team, I volunteered. A lot of advocacy is just being willing to take on responsibilities and take initiative when it’s needed.
I am also joining the advisory board of the MBC patient-advocate organization, METUP. METUP was founded by two Hear My Voice graduates from the 2015 class They saw the need for a group whose sole purpose is to end MBC through direct action. We partner with other organizations on events, like the upcoming Stage IV Stampede in Washington DC with METAvivor, to advocate for federal legislation increasing metastatic cancer research funding and challenge the status quo in the breast cancer community. MET UP knows that a cure will not be found until major changes happen in the research and legislative arenas. The number of women and men who die from breast cancer each year has not changed significantly in over 30 years. Something needs to be done, and MET UP is working on it.
Advocacy has become a big part of my life in a short amount of time. It has opened doors for me to take part in ground-breaking research, given me a platform to advocate for myself and others, and most importantly, it has given me personal fulfillment in a time when I needed it for survival. All it took was believing in myself.
Catherine is from the San Francisco Bay Area, where she lives with her husband, Chico, and their two miniature schnauzers, Coco and Charlie. She loves books, traveling, cooking & eating (She says, “I never met a pizza I didn’t like!”), the Oregon Ducks, and outdoor adventures. This year she’s training to hike Rim to Rim in the Grand Canyon and surf in Mexico! After a couple of life-changing experiences last year that helped her deal with her diagnosis, she adopted a new motto: We never have another chance at today.