In this episode, we hear the remarkable story of Wenora Johnson, a three-time cancer survivor who faced the challenges of job loss, single motherhood, and pursuing an education, all while navigating her diagnoses. Wenora shares her experiences with warmth, humor, and wisdom, offering valuable insights for anyone facing adversity. We delve into the cultural taboos surrounding cancer in her community, the critical role genetics played in her health journey, and why involving loved ones in our health decisions is so essential. Wenora’s story goes beyond survival; it’s about how she turned her experience into a passion for patient advocacy, making a lasting impact in the cancer community.
About our guest
Wenora Johnson is a three-time cancer survivor (Colorectal, Endometrial and Basel Cell Carcinoma), Volunteer Research/Patient Advocate and Navy Veteran. As a volunteer with various organizations, she shares her understanding of policy; research; genetic testing; hereditary cancer; patient engagement and clinical trials with patients and the healthcare community. Being a Lynch Syndrome patient, Wenora advocates for genetic testing and awareness. She serves on various panels and review boards to provide extensive feedback on her role as a patient and research advocate with organizations such as CAP (College of American Pathologist); Clinical Trials Curator for Fight CRC; FORCE (Facing Our Risk of Cancer Empowered) Research Advocate, Peer Navigator and Board Member; a Consumer Reviewer for the DoD Peer Reviewed Cancer Research Program; a PCORI Ambassador and Clinical Trials Panel Member; IRB for local community hospital; NRG Oncology Patient Advocate Committee Member and the AACR Scientist~Survivor Program - presenting a poster on financial toxicities and disparities among minority patients; Center for Genomic Interpretation (CGI) Acceptable Thresholds Committee Board Chair and an External Advisory Board Member for WCG Clinical Services.
She has written various patient advocate blogs and participated as a guest speaker/panelist and serves as the Community Patient Advocate for the University of Chicago Comprehensive Cancer Center and the University of Chicago Cancer Center. Wenora works in administration in the greater Chicagoland area and enjoys reading and traveling with her family.
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.”
Visit the Manta Cares website
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.
About our guest
Wenora Johnson is a three-time cancer survivor (Colorectal, Endometrial and Basel Cell Carcinoma), Volunteer Research/Patient Advocate and Navy Veteran. As a volunteer with various organizations, she shares her understanding of policy; research; genetic testing; hereditary cancer; patient engagement and clinical trials with patients and the healthcare community. Being a Lynch Syndrome patient, Wenora advocates for genetic testing and awareness. She serves on various panels and review boards to provide extensive feedback on her role as a patient and research advocate with organizations such as CAP (College of American Pathologist); Clinical Trials Curator for Fight CRC; FORCE (Facing Our Risk of Cancer Empowered) Research Advocate, Peer Navigator and Board Member; a Consumer Reviewer for the DoD Peer Reviewed Cancer Research Program; a PCORI Ambassador and Clinical Trials Panel Member; IRB for local community hospital; NRG Oncology Patient Advocate Committee Member and the AACR Scientist~Survivor Program - presenting a poster on financial toxicities and disparities among minority patients; Center for Genomic Interpretation (CGI) Acceptable Thresholds Committee Board Chair and an External Advisory Board Member for WCG Clinical Services.
She has written various patient advocate blogs and participated as a guest speaker/panelist and serves as the Community Patient Advocate for the University of Chicago Comprehensive Cancer Center and the University of Chicago Cancer Center. Wenora works in administration in the greater Chicagoland area and enjoys reading and traveling with her family.
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.”
Visit the Manta Cares website
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.