Voices on Cancer is an award-winning Cancer.Net Blog series where advocates share their stories and the lessons they have learned about being a cancer advocate. Dana Deighton is a stage 4 esophageal cancer survivor and the Associate Director of Outreach and Strategic Partnerships at Scripps Research. There, she works to drive enrollment for the National Institutes of Health (NIH) All of Us Research Program. Also active in the cancer advocacy space, Dana mentors other patients and serves as an Executive Board Member of the Esophageal Cancer Action Network, Co-Chair on the Patient and Family Advisory Council for the University of Maryland Greenebaum Comprehensive Cancer Center, and as a patient representative on the American Society of Clinical Oncology’s (ASCO’s) Locally Advanced Esophageal Cancer Guideline Panel. She is also a member of the National Cancer Institute (NCI) Patient Advocate Steering Committee and the NCI Esophago-Gastric Task Force.

My patient advocacy story

“If only I had known one other person.”

“If there had only been more data available.”

These statements were true during my life-changing stage 4 esophageal cancer journey that began a decade ago. Then, I was a young 43-year-old mother of 3 who did not match any of the usual criteria for the disease, which still has only a 5% survival rate if it has spread to distant parts of the body. I was not an older man; I was not from an at-risk racial or ethnic background; and I did not have lifestyle habits that can often increase risk, like smoking, drinking, or an unhealthy diet. I didn’t even have the telltale symptoms of esophageal cancer, such as acid reflux and trouble swallowing.

What I did have was metastatic disease that kept masquerading as lupus and other cancers, and I was almost treated for other unconfirmed cancers. The bottom line: my treatment was delayed, and my quality of life was depreciating quickly. 

Once I finally did get a diagnosis, it was more formidable than all the others suggested. There was scant data on how to treat someone that was not a man over the age of 65 who was having trouble swallowing. But there was plenty of advice like, “Get your affairs in order.”

This was not acceptable to me. As I mentioned, I was 43. I had 3 young children. I was not ready to “get my affairs in order.” But the many doctors I spoke to did not have other suggestions. As far as they knew, I was an outlier. From their perspective, young women simply didn’t get this type of cancer. But I did, and I had no one to talk to about my situation.

So, I scoured the internet, and I did eventually find a few peers. Then, through them, I found some possible providers and treatments, and I was empowered with valuable questions to drive conversations with the providers I was seeing. But even after my cancer improved following 8 cycles of grueling chemotherapy, most physicians said the same thing: “No radiation therapy. No surgery. The data doesn't support that. We just don’t do that for stage 4 patients. You need to preserve your quality of life now.” That was infuriating for me to hear. If I did not fit in any of the data buckets for this type of cancer, what data were they referring to?

When I did find “my team” of providers to help me in the next phase of my cancer journey, almost every pivotal step forward in my treatment was made by looking outside the box and taking risks. There really was no choice. I had made the choice to live, and despite the fact that the odds were stacked against me, I did just that.

By surviving a series of “just make it to the next day” challenges I gave myself each day, I was able to string together more weeks, months, and years that the data had tried to deny me. The result was much more than the benefit of temporarily cheating death; the time I bought allowed science to do its work and leapfrog ahead of the original possibilities that existed for my type of cancer. I was able to take advantage of new immunotherapy treatments that did not exist just a year earlier. I also learned why my tumor markers were so unclear: my cancer was “microsatellite instability-high (MSI-H),” which meant the DNA was predisposed to mutating. That answered so many questions and made immunotherapy a feasible option. I also learned I do not have Lynch syndrome, a familial cancer syndrome that is present in many people with stomach cancer that I had received testing for, as my mom died from colon cancer years back.

Working to change the cancer landscape

Now that I’m gratefully and somewhat miraculously on the other side of cancer, I have seen positive improvements in the availability of information for people newly diagnosed with cancer. For example:

• There is an abundance of online digital communities that connect people with cancer and caregivers in a safe space where shared experiences can be discussed and questions can be answered.

• There are advocacy organizations representing almost every type of cancer. They, too, can help make connections for people with cancer and providers and contribute other resources.

• There are research programs, patient registries, electronic health record (EHR) aggregators, survivor apps, wearable devices, and fancy artificial intelligence that can all work in concert to expose trends and improve outcomes through precision medicine.

Many of these were missing at the time of my cancer journey.

Since receiving my diagnosis, I’ve watched my kids grow up, and I have continued to lead a healthy, active life. And as a big believer in the power of connection and participation, I contribute to many cancer advocacy organizations and take part in research to help expand the data available for patients like me.

I even changed my career so that I can try to give back as much as I can to help improve the cancer landscape. I am now proud to be working on the National Institutes of Health’s All of Us Research Program, which is a study to collect data from a million or more people so that everyone—no matter their background—is represented in medical data going forward. All of Us is building a database so that researchers may be able to uncover patterns of disease and determine why people get sick or stay healthy.

All of Us is for anyone, including people with cancer, survivors, and caregivers. Participants can also receive their genetic results and learn about their ancestry and whether they carry specific mutations that may be worth discussing with their doctors. 

What will research like what we’re doing at All of Us mean? It will mean:

• Representation in medical data of people from all backgrounds

• Improved possibilities for precision medicine

• Better outcomes for us and for generations to come

As a cancer survivor and advocate, my hope is that everyone seeks preventative care, advocates for themselves, and recognizes just how powerful their participation is in their own medical care and in medical research that can help inform care for many others.