My metastatic breast cancer diagnosis in March of 2015 at age 49 did not throttle my world or change it in the ways I’ve read about in blogs and books and in other personal narratives. Instead, my MBC diagnosis changed the way I’d heretofore approached the medical community and the decision process they used to determine my own care, which was delivered to me by way of prescriptions and advice, mostly. I had little say in the matter. In fact prior to my week long hospital stay, I’d only been in the hospital once before – when my mother gave birth to me.
I’d always educated myself on the diagnoses handed to me or to my friends and family members. In fact, on five separate occasions, I disagreed with the doctor’s assessment of my husband’s health issues. After looking at my non-medical amateur diagnosis and the research behind my educated hunch, he went back to his physicians with an alternate diagnosis. One aspect of a patient to which doctors aren’t privy are their daily psychosocial, health, and other important issues that may impact their conditions – for better or worse. Partners, wives, husbands, friends, family usually do not have the opportunity to provide a more dimensional picture of the patient and therefore the physician only sees a single snapshot, including tests, of a patient’s health during the short window of a visit. Every time he re-visited or had a discussion with the doctor regarding my deep research and further assessment of his condition, my opinion was correct.
I’m no doctor. However, what the doctors didn’t have access to was the intimate knowledge of my husbands psychosocial situation, the outlying events, and the ongoing symptoms, which are impossible for them to observe. I sleep next to him. They sleep elsewhere.
Why then do we cancer patients sit back and take what’s handed down as gospel by our oncologists and other members of our cancer teams?
As stage IV patients, the end it would seem consists of drug after drug until they stop working and then the painful statement, “there nothing more we can do for you.” Au contraire! And, for god’s sake, never ever tell a tenacious 50 year old, self made woman, “we don’t do _______ on people like you.” On that occasion I’d brought up surgery as an option and that came after many readings and a new study that looked at the charts of MBC patients across decades that found without a doubt that we live longer when primary tumor surgery is performed. Surgical procedures were slowed to a halt about 20 years ago for MBC and the mortality went up significantly. While not conclusive enough and still controversial, I want to deliver this as my story to illustrate why we the patients are the best suited to be our own patient advocate.
Patients must therefore become the drivers of their Oncology Care Team. Back seat drivers don’t get anywhere, they just get annoying. I spent 27 years in marketing in high tech and have written for professional print and online content providers and have now changed careers due to my lackluster energy and bone pain from the mets. However, I love my slowed down life and good husband.