When my late wife was diagnosed with BRCA2-related triple-negative breast cancer, I realized how important medical literacy is for patients and their loved ones.
Trying to make sense of the countless test reports and blood work results that are given to patients with cancer can be confusing and overwhelming for both patients and caregivers, and a doctor’s lack of time and effort to fully explain the results and the potential consequences when there is an atypical report can add to the frustration, and sometimes even be life-threatening.
When I was my late wife’s caregiver during the often-challenging treatment for her metastatic triple-negative breast cancer, I had to take on the additional task of trying to figure out what every blood test or scan report determined and what could be done for results that were abnormal or out of range.
After every oncologist’s appointment, I diligently researched what each test result meant or might mean in the future so I could try and intelligently ask her doctors and nurses questions about it. But it was a daunting task finding current and relevant credible peer-reviewed papers, especially as many were often behind paywalls. And it didn’t help that I was just an artist. While not scientifically ignorant, I’m not a medically trained professional. Illustrating an occasional medical or science story for a children’s magazine hardly qualified me for a very difficult role that I was forced into unexpectedly one day.
And as the cancer advanced and the treatments became more desperate, doctors seemed to explain less and less, and I had to double my efforts researching and getting doctors to let me know all the details of her care.
And all of this was made worse by the fact that my wife’s cancer was preventable. Because she inherited a BRCA2 mutation, genetic testing and prophylactic surgery would have significantly reduced her risk of getting breast cancer. But information about the germline mutation and the threat to her and our daughter was never expressly shared with her or many other family members by relatives that had known about it for years. I believe that had a relative’s gene sequencing report been better explained by a doctor and had it clearly stated how the positive result could also potentially affect all blood relatives, my wife would be alive and a previvor like our daughter, who inherited the mutation from her mother.
Medical literacy is important, but not everybody is medically educated. Sometimes it is hard for the patient to know every detail and to know what is significant and potentially life-threatening and what isn’t and what questions to ask. It should be the duty of the doctors and the labs to explicitly, and in simple terms, explain what a positive or out-of-range test might mean for the patient – and sometimes even relatives.
The author is a hereditary cancer widower and solo parent of a BRCA2 Previvor. He’s showing up and speaking up about cancer prevention. He believes nobody should die of a preventable cancer. Nobody!
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