Ep 72: Lynch syndrome and surviving cancer three times, this is Wenora’s cancer story - The Patient From Hell Podcast
In this powerful episode, Wenora Johnson, a three-time cancer survivor, shares her extraordinary journey of resilience, advocacy, and breaking barriers.
From navigating job loss and single motherhood while undergoing treatment to pursuing higher education, Wenora’s story is one of determination and hope. She reflects on the cultural taboos surrounding cancer, the role of genetics in her health journey, and the importance of including loved ones in medical decisions. More than just a survivor, Wenora has transformed her experience into a mission—becoming a leading voice in patient advocacy and making a lasting impact in the cancer community.
About Our Guest
Wenora Johnson is a three-time cancer survivor (Colorectal, Endometrial, and Basal Cell Carcinoma), a Navy Veteran, and a dedicated patient advocate. She is deeply involved in genetic testing awareness, clinical trials, and healthcare policy, serving on multiple advisory panels, review boards, and advocacy committees. Wenora is a Consumer Reviewer for the DoD Peer Reviewed Cancer Research Program, a PCORI Ambassador, and an External Advisory Board Member for WCG Clinical Services. She also serves as the Community Patient Advocate for the University of Chicago Comprehensive Cancer Center.
Beyond advocacy, Wenora enjoys reading, traveling with family, and continuing to empower others through her work.
Key Moments
3 minutes
“After going to the dermatologist, I told her, ‘I have Lynch syndrome and I suspect that this could be something involved.’ And she was like, ‘No, you have extremely oily skin. I believe it's more associated with that. And think you have like a sack of oil cells around this little pimple that's on your backside and I'll just remove it.’ Well, while sitting there in the office, she started to remove it and she wound up removing about two inches of basal cell carcinoma out of my backside. It was a really big wake up call for me because number one, I'm thinking about the myth of as a person of color, we don't go out in the sun, know, we don't get skin cancer, but that's far from the truth. We can get skin cancer. We can be exposed to whether it's environmental or hereditary skin cancers. That was, that was a wake up call for me and I think it further pushed me in my initiative around awareness for cancer of any kind.”
16 minutes
“Here I am, I was fussing that my mom never told me about my grandfather passing away from colorectal cancer and her potential for cancer as well. And so I fussed about that after going through my cancer, only to realize that I was doing the very same. I thought I was protecting my children by not sharing information with them that was probably just as important for their health going forward as they reach adulthood because I wanted to be the mom that was like ‘don't worry, I've got this. It's going to be okay.’ And I think that's where we make our mistakes. And that mistake for me is it was not sharing with them the true battle of what was going to lie ahead. Because it robbed them of their ability to be more helpful to their mom so that they could have some closure if something were to happen to their mom or to someone that they loved.”
31 minutes
“I think that's one of the things I've learned as a patient advocate, because I got on this band of, everybody wants to do this, right? Everyone wants to share their story and their cancer journey and how they can make life better but that's far from the truth. Not everyone wants to share that story. Some just want to make it through the day, let alone try to share their story. I get that and I respect that and allow yourself grace for having that feeling. There's nothing wrong with that.”
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YouTube Chapters:
0:00-9:00 How Wenora discovered she has lynch syndrome
9:01-16:06 From the military to patient advocacy
16:07-27:31 Ending generational secrets surrounding our health
26:42-32:00 Wenora takes on Capitol Hill as a patient advocate
32:01-41:22 Rapid Fire Q&A on lynch syndrome, colorectal cancer, and advice
41:23-42:50 Good byes and disclaimer
YouTube Tags:
Manta Cares, metastatic breast cancer, survivorship, patient advocacy, coping with loss, colorectal cancer, skin cancer, endometrial cancer, lynch syndrome, hereditary nonpolyposis colorectal cancer, hereditary cancer gene, cancer genetic testing, cancer sucks, self-advocacy
Disclaimer: All content and information provided in connection with Manta Cares is solely intended for informational and educational purposes only. This content and information is not intended to be a substitute for medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.
