My Experience as a LEAD Graduate
I want to share my experience as a recent LEAD graduate and patient advocate. Project LEAD is part of the National Breast Cancer Coalition. The Project LEAD Institute strongly supports the education and involvement of patient advocates in both research, action, and the education of the community they serve both locally and nationally. You can read more about it here. This is a portion of a statement from the web page giving you a sense and focus of the LEAD graduate program:
The Project LEAD® Institute is a six-day intensive science course for breast cancer advocates covering the basics of cancer biology, genetics, epidemiology, research design and advocacy.
I learned about the program through two fellow breast cancer survivors, Michael Singer, a male breast cancer survivor, and Terry Arnold, an advocate for the Inflammatory Breast Cancer Community. I met them both at SABCS, San Antonio Breast Cancer Symposium 2016. They attended Project LEAD and encouraged me to apply. I want to thank them both publicly for the inspiration to apply and their own continued advocacy work.
LEAD Registration and Arrival
I arrived at Project LEAD Institute 2017 in early July. It was held in San Diego and the weather couldn’t have been better coming from the scorching heat of Arizona. Registration took place Sunday afternoon as the forty-one, soon-to-be LEAD graduates received badges and a massively heavy notebook with the week’s agenda and slide presentations. That has since become a valuable resource.
I did not know if I would see anyone there I met from previous conferences or on-line social media interactions. I was pleasantly surprised to know a friend was going to be there, my pal, and fellow advocate, Stacey Tinianov, AKA, @coffeemommy, who I also met at SABCS in December of 2016. I posted on social media that I had arrived for the LEAD Program. I got an immediate text from Stacey saying she would be there, too. I was thrilled to see her again. She introduced me to her roommate, another fantastic advocate and breast cancer survivor.
Our classes began Sunday afternoon after registration. This was going to be an intense week of study with not a moment of time wasted. What I appreciated was the question they asked us to answer as we passed the microphone around the lecture hall to introduce ourselves. They asked us,
What is it you hope to achieve and accomplish as an advocate at Project LEAD this week?
We were told not to discuss what we do but to only answer that question. I liked that because it leveled the playing ground. We weren’t there to discuss our individual missions, communities, or outreach. The question asked gave us a verbal commitment of our goal for this rigorous week of study.
A Day in the Life of a LEAD Graduate
We began at 8 a.m. each morning pulling out our massive notebooks and settling in with our coffee and laptops ready. We studied the basic science and biology of cancer that included but was not limited to DNA, epidemiology, evidence based research, observational studies, clinical trials, and evaluating scientific articles in the media. Presenters included well-known scientists and researchers from some of the finest organizations and institutions across the United States.
Break out study sessions were directed by our LEAD mentor who help review concepts presented during the morning and afternoon sessions. A scientist or research presenter was always in the study group to initiate questions to help us understand and verbalize what we learned in the presentation. Study groups consisted of smaller groups who worked on a common presentation with a specific topic on the final day of graduation.
We shared life events at meal and break time. We laughed and occasionally gave each other side ways looks when we didn’t always agree on points of view. In the end, we celebrated. We applauded each other during our graduation. We hugged and took snapshots and selfies. We shared copious amounts of delicious food in a beautiful resort setting often calling it project FEED instead of project LEAD.
I made new friends, lifelong, I have no doubt. I met young women in their early 20’s and 30’s who were living with metastatic breast cancer whose lives are forever changed by the side effects, surgeries, and the sobering fact that they are living with a disease that is considered incurable. I met an advocate who had been diagnosed once, twice, and even three times with breast cancer. And yet, her smile lit up the lecture hall.
I am a two-time breast cancer survivor but my focus is educating those in need of information and resources about breast reconstruction. I was very honored to be at LEAD but admittedly a bit uncomfortable knowing my focus was moving beyond breast cancer and educating about breast reconstruction.
I was never questioned about that until the last day. I was sitting on a bench with my brilliant and thoughtful mentor when the question was presented to me. I was asked how being a part of LEAD would help me with my work and if I only focused on breast reconstruction. I told her that I was very appreciative she asked me the question.
Simply stated I explained to her that without breast cancer there is no breast reconstruction. Patients go through fear, confusion, over consumption of scientific and medical information when confronted with a breast cancer diagnosis. Who do these patients turn to for guidance?
Patient Advocacy Comes with Responsibility and Challenges
I want to continue to be that resource but with that comes responsibility and challenges. How are those challenges met? Through programs that develop advocate skills to understand the science behind a disease that effects close to a quarter of a million women and men every year just in the United States. I will continue this Journey of educating those in need. Attending Project LEAD gave me the skills to accept the responsibilities and challenges of that commitment.
This is what I learned about the advocates I met at the LEAD Institute that week.
Advocates are fierce and brave. They live life with a bit of a frenetic time line to do as much as they can while they can. My roommate has been living with metastatic disease for several years. What an inspiration! The second morning we were there, I was in the bathroom preparing for the day and I heard her on the phone and she was crying. She received a phone call from her community that one of their fellow metastatic sisters died. I went over to hold her. She wiped her tears and continued with her day. She explained that this is part of her life now, the frequent loss of friends.
We shared laughter and personal stories of our “sassiness” after cancer. I loved this moment with a new friend who, like me had DIEP flap surgery after mastectomy. She decided to show her “sassy” through a deeply meaningful tattoo over her abdominal incision.
I was both inspired and exhausted as many were when we left that Friday.
It gave me a renewed sense of purpose. I had to quickly switch gears as I left the LEAD program Friday afternoon to fly to San Francisco for the weekend for Foundation work. I spent Saturday recording videos for an upcoming patient advocate panel I will be participating in for Plastic Surgery the Meeting to encourage surgeons who rebuild lives through breast reconstruction what the value of patient engagement can do for their practice.
The LEAD Project and being a graduate reinforced my purpose and passion as a patient advocate because of who I met and what I learned. These LEAD graduate advocates are here to be heard. Their educated, informed, and passionate voices make a difference across a variety of health care sectors and communities. I encourage you to listen to them, ask them questions, value their wealth of knowledge and the lived experience they bring to the table. The collaboration between the medical community and advocates can only improve the experience for others.