When we met Laurie MacCaskill, we were immediately blown away not just by her personal story of self-advocacy and never taking no for an answer but also by her warmth and her passion for helping others. A pancreatic cancer survivor, MacCaskill is a speaker and motivator who has served as the Chair of the Board of the Pancreatic Cancer Action Network and lobbied congress for cancer research funding. Her story—and how staying connected, engaged and working helped her cope—rings true with so much of what CAC has been advocating for more than 20 years. We sat down recently to get to know her better.

I know you have quite a story about your own cancer experience, from diagnosis to treatment to self-advocacy. I’d love to start with you sharing that for our community. And please include any critical learnings that your self-advocacy taught you that may benefit our community.

When I was first diagnosed with pancreatic cancer and told “you have 3 months”, it felt like my world was turned upside down. Complete shock, fear and disbelief overcame me, not just because of the diagnosis itself, but because I had always felt healthy. Doctors originally dismissed it as “nothing serious”, but the pain was relentless. Still, deep down, I began to sense that something was wrong, and I voiced my concerns.

The initial dismissal by doctors was one of the hardest parts. When your body is sending you signals and the people you trust with your healthcare don't listen, it can be incredibly isolating. But I refused to give up. I knew my body, and I knew that what I was experiencing wasn't normal. I thought I just had an infection, and an antibiotic would be the answer; cancer never entered my mind. But my symptoms didn’t subside, and I wanted to know more. So, I did the one thing that ended up saving my life; I used my voice. I became my own advocate.

Looking back now, the most critical thing I learned from my experience is the importance of self-advocacy. No one else knows your body as well as you do, and if something feels wrong, it's crucial to push for answers, no matter how many doors are closed in your face. For me this meant getting 2nd, 3rd and even 4th opinions until someone took my concerns seriously.

Self-advocacy isn't just about being assertive with medical professionals -it's about educating yourself. So, after my diagnosis, I immersed myself in understanding pancreatic cancer, treatment options, and possible outcomes. This knowledge empowered me to ask the best questions I could and make informed decisions about my care. 

What was your work/professional life like before diagnosis? And after? Were there specific challenges you faced related to working/engaging in professional environments after a diagnosis?

Before my diagnosis, I had an active and diverse professional life spanning several roles that required a variety of skills. My energy was non-stop, and there were few restrictions in my life. The only limitations were those I set or felt incapable of achieving. I worked as a partner in a commercial design firm, engaged in advertising and art sales, real estate, and took on communications consulting. 

My involvement extended to leadership positions within charitable organizations. At the time of my diagnosis, I was serving on multiple boards both as a member and chair which presented unique challenges. Living in Los Angeles while frequently traveling to Washington DC as member and Chair of the Board for a committee with the Kennedy Center for Performing Arts was particularly challenging.  In addition, I was a member and Chair of the Board for the Pancreatic Cancer Action Network (PanCan). Despite the physical and emotional toll, I refused to alter my schedule. Delegating travel or other responsibilities would have been understandable, yet I was determined not to let cancer dictate my life. I remained committed to my board duties, including lobbying Congress for research funding, speaking in front of pharmaceutical companies, consulting with scientists and medical professionals and sharing my story with support groups. 

I was particularly sensitive about missing meetings, meeting deadlines, and making sure I appeared fully capable of handling my responsibilities. The intense and grueling chemotherapy regimen, which lasted nearly 4 years, drastically changed my appearance. The constant debilitating side effects were overwhelming.

Despite these challenges, I was determined not to let the illness define me. I wanted to maintain this sense of normalcy and prove to myself and others that I could still contribute and perform at a high level. I achieved this by focusing on the present moment and avoiding the trap of imagining negative outcomes. I practiced a form of healthy denial, refusing to see myself as a cancer patient. Although I deeply missed the old me, I never felt bitter or asked, “why me?” instead, I was determined to persevere and learned to accept the changes that came with each meticulously planned hour of events.

If you could wave a magic wand, what would be one law or piece of legislation you would enact tomorrow to benefit the cancer community?

I would want to mandate universal access to affordable, comprehensive cancer care for all individuals, regardless of their financial situation.

Early detection is key to improving the survival rates, and research is the driving force that will enable us to make significant strides in this fight. Without proper funding, we cannot hope to change the outlook for those diagnosed.

If today’s Laurie could give advice to day-of diagnosis Laurie, what would she say?

Pay attention to Silver Linings- trust me, there will be many. You won't believe how rich and expansive your view of life will become.

Some other key tips:

1. Don't play the ‘what if’ negativity game. Turn negative thoughts into what is possible. Control the controllables. 

2. Take baby steps - they're the most valuable coping tool.

3. Believe in yourself and use your voice. I believed I would be in the 6% that survived 5-years, and I've now survived 18. Be an active participant in your healing process. 

4. Be meticulous with your record keeping. I felt like I was navigating unchartered territory, speaking a foreign language. However, my diligence and documenting everything strengthened my relationships with doctors and served as a safety net when mistakes were made.

5. Ask for help - vulnerability is a gift. You don't have to do this alone. 

6. Be kind, be grateful, be present. 

I couldn't have done this alone. I am profoundly grateful for the love and support of so many, then and now.