Janice Cowden, retired nurse and patient advocate, shares her remarkable triple negative breast cancer (TNBC) story. Five years following successful treatment for stage one breast cancer in 2011, Janice was diagnosed with a stage 4 metastatic TNBC recurrence. As of today she has 8 years of no evidence of disease (NED) under her belt. She shares how she stumbled upon the cancer community that inspired her to become the advocate she is today and the uncertainty that comes with NED. She also shares how she copes with losing friends in the cancer community through her patient advocacy work. We also have a rapid fire Q&A where she answers questions surrounding various medical terminologies, diagnoses, and more to keep you in the loop.
NOTE: There is one clarification from the rapid fire Q&A session. The definition of disease free survival (DFS) is the time from random assignment (used in clinical trials and research studies to assign participants to different groups) to cancer recurrence or death from any cause (Gutman SI, Piper M, Grant MD, et al. 2013).
Diagnosed with Stage IV triple negative breast cancer in 2016, five years after an early-stage breast cancer diagnosis, Janice launched into patient advocacy following training through Living Beyond Breast Cancer’s (LBBC) Hear My Voice Outreach program in 2017. As a peer-to-peer support and research patient advocate, Janice is passionate about supporting others with metastatic breast cancer, in addition to continually furthering her scientific knowledge base of this disease, treatments, and clinical trials, which she acquires through attending scientific breast cancer conferences and webinars. Janice is involved with several patient-founded and led organizations including PCDI, GRASP, and Project Life MBC. As a trained peer support volunteer, she is founder of an international online peer support group for patients newly diagnosed with MBC. She serves on the Board of Directors for METAvivor Research and Support Inc., and is an Advisory Board member for Project Life MBC. She is an individual member of the Metastatic Breast Cancer Alliance. When she’s not busy with advocacy work, Janice enjoys traveling, reading, outdoor activities, and spending time with family, including her husband, two adult children and three grandchildren.
Key Moments
9 minutes:
“We don't use the word cured. We don't use the word remission. We just say that I have continued no evidence of disease. It would probably be unusual at this point in time to have progression. But I do know others who have had progression with the exact same subtype of my disease more than 10 years out. So we never say never.”
22 minutes:
“I look back now and I think, how did I not read the statistical average that up to 30% of those diagnosed with early stage breast cancer will have a metastatic recurrence? I didn't know that. And that's not something that oncologists as a rule talk to patients about. It could be that they don't want to incite fear, but in my opinion, that is a knowledge gap that we really need to know. I know there are some patients that don't want to know. People have all different desires on how much and what it is they want to know.”
50 minutes:
“I think everybody has to deal with it differently, but that's the only thing that gets me through. It's not that I'm numb to it or that it doesn't bother me, but I feel like I owe them. I owe them my time to continue advocating on their behalf as part of their legacy.”
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YouTube Chapters:
0:00-9:55 Janice’s Metastatic Breast Cancer Story
09:56-21:42 Life before cancer and life right after diagnosis
21:43-29:02 How to stay informed on the latest in oncology
29:03-40:26 Rapid Fire Q&A on MBC terms and definitions
40:27-46:07 Scanxiety
46:08-52:50 Losing friends in the cancer community
52:51-53:43 Outro/disclaimer
YouTube Tags: Manta Cares, triple negative breast cancer, metastatic breast cancer, survivorship, patient advocacy, breast cancer, MBC, coping with loss, grief, cancer sucks, TNBC, Stage IV cancer
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