At the age of 39, I was diagnosed with stage 0/1 breast cancer.

While it was identified as an aggressive cancer, it was caught very early, and I was treated solely with bilateral mastectomies (after a lumpectomy didn’t get clean margins). I had two young boys, aged 2 and 4, and I wanted to put breast cancer behind me as quickly as possible. I pushed it out of my mind and moved forward. For 12 years I remained cancer-free.

Then at 53, I was diagnosed with stage 4, metastatic breast cancer.

My HER2+, ER+ subtype gave me about a 40% chance for 5-year survival.  

This time around, I’ve devoted a lot of time trying to understand the disease and identifying possible strategies for delaying recurrence and further metastasis. I’ve also embraced current standard care therapies and I’ve been fortunate enough to have three years with no evidence of disease (NED). I’ve been told that I’m now considered an “exceptional responder” to the medication, but in truth, I think that it is the combination of the medication and the additional strategies I’ve discovered from high-quality, peer-reviewed research studies.  

Research studies are showing amazing progress.

The US spends about $7 billion annually on cancer research but a lot of very good research, yielding important findings, doesn’t advance past the publication of results. The data can be valid and significant, but if it doesn’t have a person or organization advancing it (time and money), then it is likely to lay dormant in ClinicalTrials.gov or PubMed. I decided to dig into this research to see if there was anything that could help me outperform the outcomes I was given and I was surprised by the important information I discovered. For example, I wish I knew that women diagnosed with breast cancer within 5-years of having children are 3X more likely to have a recurrence 10-15 years later. I would have pushed for more diligent screening, perhaps catching the cancer in an oligometastatic state (<5 tumors) which tends to have a better prognosis and is sometimes curable. 

I don’t have a clinical research background, but I have been doing market research, strategic planning, and marketing for healthcare organizations, for over a decade. My career spans 30 years and most recently I was the Chief Operating Officer for a marine robotics company specializing in subsea navigation and autonomy. I’m comfortable reading complex research papers, but I also know the limitations of my knowledge and I enjoy engaging experts in discussions.