This is Part 2 of a contribution from one of our readers. In Part 1, Brittanny Groover shared her journey as a cancer survivor. She movingly recounted her treatment for Stage 3 melanoma and emphasized the importance of having the correct healthcare system in place for proper diagnosis and treatment. This second half of the narrative details her life as a patient advocate.
Advocacy
Now I am on the other side. I have done the research. I have learned the language. I have learned how to find trustworthy information and how to fight misinformation online. I have learned how to help other cancer warriors find their footing in a world that feels impossible to navigate at first. I share my story on social media as the creator behind @beingbrittanny, and it’s opened doors I never imagined — rooms with lawmakers, conversations with cancer researchers, and connections with fellow cancer patients and advocates around the world.
We have been dubbed the “melahomies.” Our collective spans from Katie O. in Arizona to Michelle in Australia to Jen in Minnesota to myself here in Pennsylvania. In fact, there are hundreds, if not thousands, more. What started online has become real-life friendship and collective action in our nation’s capital and beyond. We trade ideas and progress from Australia and Europe because, when it comes to skin cancer prevention and sunscreen policy, the United States is sadly about three decades behind. We’re working hard to change that and expand access to safe, effective prevention for everyone.
As recently as March, I was in Washington, D.C., on Capitol Hill with the Melanoma Research Foundation. We were in the office of our District 14 congressman, Guy Reschenthaler, asking for his help to keep $40 million in funding for melanoma research in the nation’s budget.
This funding has remained consistent for the last several years, and we want to keep it there. I am constantly in contact with his office to stress the importance of funding the FDA, NIH, and NCI so research can continue to save lives like mine.
The drug I was given in 2021, Keytruda, was FDA approved less than two years before my diagnosis. It had just finished clinical trials and research status while the melanoma was still growing on my body. By the time I was diagnosed, it was FDA approved and ready for me to access and save my life. We need more of that. Stories like mine, shared with our grassroots lawmakers, are what make change possible.
I was selected out of hundreds of applicants as one of only 30 people to represent the Melanoma and AYA cancer community at the FDA GRASP Cancer Workshop. This was a full day inside the FDA with 29 other cancer patients of all ages, races, genders, and cancer types from around the nation. I spoke with researchers who work on clinical trials and told them my story. I heard about their day-to-day work, and I added my patient perspective to help them understand the difference between what they think patients want and what we actually need.
For example, the MCED Act and the Nancy Sewell Early Cancer Detection Screening Act, which I have been working on with the American Cancer Society Cancer support a test called ctDNA. It is a blood test that can catch cancer earlier than ever before. FDA researchers raised concerns about releasing this test to the public. Why tell people they have cancer so early if we can’t treat it yet?
My counterpoint was: if we can diagnose cancer earlier, we can change how we approach it. We will have to learn to live with the stress of having cancer, but we already do that. Instead of being thrown into a car crash and learning what happened afterward, we can use that crucial time to sit down and let doctors teach us about our cancer from the beginning.
I caught mine at Stage 3. When you catch something late, you miss multiple chapters of information — it’s like opening a book in the middle, reading to the end, and then trying to comprehend the beginning. It doesn’t make sense the way we do it now.
Why There Is No Finish Line
I speak up for patients like me — people who see small-town doctors and don’t have easy access to big hospitals. I stand up for folks who aren’t given medical information in plain language, for people who struggle to understand complex words because of mental health challenges, limited schooling, or simply because they just don’t comprehend it. Many are hard workers who fix cars, build houses, and keep our communities running. We don’t always know medical terms, and that’s okay.
When doctors use big words, we can get lost and scared. We might nod along, but we don’t really understand what they mean. My job is to take those words and make them simple. I explain things in a way regular small-town people can follow so care feels less frightening. I want patients to leave appointments knowing what’s happening, what to expect, and what to ask next. I hope this piece does that for you.
That is why I call it a journey. There is no end. I still live with side effects from treatment every day. Those effects are part of me now. They are woven into who I am. They are the reason I speak up. They are the reason I fight for other patients the way I wish someone had fought for me.
There is no finish line. There is only the next step, and then the next, and then the next. Somehow, through all of it, you become more caring and more grounded. Not because cancer is a gift — it is not — but because surviving it makes you see the world differently. It makes you see yourself differently.
This is my life now. I keep walking through it, one day at a time.
