Wenora’s Story
When asked how her friends and family would describe her in one word, Wenora says “resilient.” Not only has she run marathons and served as a U.S. Navy Reserve veteran, but Wenora is also a three-time cancer survivor – and now someone fiercely committed to patient advocacy and helping to make the journey for those coming behind her a little easier.
Cancer Journey
Wenora’s cancer journey began in 2011, around the time she was completing her service in the Navy Reserve. During her visit with her primary care doctor that year, he asked Wenora to screen for colon cancer.
“I felt fine and healthy. I was running around living my life, working full time while completing a master’s degree program in public administration. Colon cancer was the last thing on my mind.”
But after a positive at-home stool-based test and a follow-up colonoscopy, Wenora learned she had Stage 3B colon cancer.
“My doctor told me I’d probably had the cancer inside me for about 15 years, which blew me away. I had prided myself on being a healthy person, and at the time of my diagnosis, I felt the healthiest I had ever been. To discover that I had late-stage cancer was a huge shock.”
She went through treatment, which included a surgical removal of about eight inches of her colon, as well as chemotherapy. After that, there was no evidence of disease, and she thought cancer was in her rearview mirror. But it wasn’t.
Genetic Testing and Lynch Syndrome
Four years later, in 2015, Wenora’s oncologist suggested that she have genetic testing. The genetic test revealed Lynch syndrome, an inherited genetic condition that significantly increased her risk of developing various types of cancer, including colon cancer, at a young age.
“At first, I was surprised to learn that I had a hereditary cancer syndrome. But then I started thinking about my family health history. My grandfather had died at age 38 from colon cancer. My mother had passed away at age 42 from glioblastoma, an aggressive brain cancer. And although I didn’t know it at the time, my brother would be diagnosed with stage 4 colon cancer the next year at the age of 39. He lost his battle with the disease in October of 2022.”
This news prompted Wenora to take action. Wenora’s oncologist told her she had a 60 to 80 percent chance of getting endometrial cancer at some point, so she opted to have a full hysterectomy. When she did, a biopsy found stage 1A endometrial cancer. That was cancer number two. Fortunately, they caught it early enough that she required no additional treatment.
Then in 2017, Wenora found a small pimple on her backside. At this point, Wenora had learned enough about Lynch syndrome to know that it gave her an elevated risk of skin cancer, so she scheduled an appointment with her dermatologist right away. It was there that cancer number three, basal cell carcinoma, was discovered.
Embracing Patient Advocacy
These experiences taught Wenora two important lessons. First, that she needed to do whatever possible to stay ahead of cancer. And second, that she wanted to get involved in patient advocacy to help bring about change for the greater cancer community.
After her second cancer diagnosis, Wenora began her patient advocacy work in the area of policy. At the time, clinical care guidelines called for colon cancer screening for average-risk individuals to begin at age 50. But the rates of colon cancer cases and deaths had been rising in those under the age of 50, especially among people of color. Lowering the screening age to 45 would save lives.
Wenora started working with an organization called Fight Colorectal Cancer, also known as Fight CRC, and joined their effort to lower the recommended screening age from 50 to 45. She traveled to Capitol Hill, where she shared her colon cancer story with members of Congress and explained why earlier colon cancer screening was important. Not long after, the clinical guideline for initial screening was lowered to age 45, which meant health insurers would have to cover it with no out-of-pocket charge to patients. That was an important victory.
After that, Wenora got involved in advocacy around clinical trials.
“One of the things I learned about clinical trials is that not enough people, especially people of color, get involved in them.”
Wenora became a clinical trial curator with Fight CRC, which involved combing through the ClinicalTrials.gov website, looking for trials geared toward people with late-stage colon cancer, and raising awareness about those trials. Today, she serves on the boards of two organizations that focus on improving the lives of individuals and families facing hereditary cancer: Connect My Variant and Facing Our Risk of Cancer Empowered (FORCE). Working to increase awareness of hereditary cancer is important to her because awareness leads to screening and testing, both of which can be lifesaving.
Family-Focused Advocacy
Of course, as someone living with a hereditary cancer syndrome, raising awareness in her own family is one of Wenora’s most important advocacy goals. When genetic testing showed her elevated risk of various types of cancer, Wenora immediately shared the news with her siblings and two daughters so they could learn about it and talk to their doctors about genetic testing and screening for themselves and their families.
Cancer Surveillance
Because of Wenora’s cancer history, she is on a regular surveillance schedule that includes yearly colonoscopies, yearly mammograms, visits with her oncologist every six months, and regular checkups with her gynecologist, cardiologist, dermatologist, and everyone else who, she says, is “an -ologist.”
“Trying to stay ahead of cancer is a continued fight, but for me it is well worth it.”
One of the things she has worked hard on is building good relationships with her health care team. Those relationships are centered around communication. For her, good communication means being transparent and honest with her providers, sharing information she comes across in her patient advocacy work, and letting them know when something doesn’t seem right.
“Before I was diagnosed with my first cancer, when a doctor would say, “How are you today?” I would say, “I’m okay,” even if deep down I had a sense that maybe something wasn’t okay. Now, I speak up about everything with my doctors, because communicating with them could mean the difference between catching cancer early or missing it until it has progressed. In turn, this openness has led my health care providers to be open and communicative with me.”
Wenora now sits alongside scientists and physicians on her hospital’s institutional review board, or IRB, a group within a hospital that formally reviews and monitors biomedical research involving human subjects. In doing so, her voice as a patient is heard. She reviews clinical trials from the patient’s viewpoint, and she raises questions and concerns on behalf of patients who may participate in these trials.
Immersing herself in patient advocacy has helped keep Wenora in a good place emotionally; sharing her story and involving herself in work to help others has been therapeutic.
“It’s dissipated some of the fear of developing additional cancers in the future. I’m not saying the fear isn’t there, because it is. But I try to let my fear motivate me to be proactive, both with my own personal cancer surveillance and with my efforts to advocate for patients.”
A Next Generation of Patient Advocates
There is always a need for more people to get involved in patient advocacy, as there is so much work to do. Wenora urges anyone who is affected by cancer to get involved with organizations that are committed to building awareness and advancing research.
“Go to the website of an organization whose work you value and click on “Contact Us” or “Ways to Volunteer.” It’s that simple.”
And to Wenora, this support and advocacy can take many forms.
“You don’t have to go to Capitol Hill and speak to Congress—although you certainly can do that if it’s what you’re interested in. You can also make a difference doing smaller things, like participating in a run or other event, or even making a donation. Whatever you choose to do can help patients.”
Just as importantly, she encourages everyone to be their own cancer advocate by having regular checkups, staying up to date with screening, having genetic testing if their doctor recommends it, and becoming aware of what it takes to survive.
“When I was going through my colon cancer treatment, I kept a quote from the writer James Baldwin on my wall. The quote read: “Not everything that is faced can be changed, but nothing can be changed until it is faced.” What that says to me is that it’s tempting not to face things like colon cancer screening. But facing it could change your life, just as it changed—and saved—mine.”