Jenny, Canada

In April 2023, while performing a routine breast self-exam, I discovered a lump in my left breast. Despite a recent normal mammogram, my intuition—shaped by my mother's parting words 23 years earlier to be my own healthcare facilitator—urged me to seek further investigation. Three weeks later, I received a breast cancer diagnosis. I have dense breasts.
Understandably, the news was met with shock and a steep learning curve. Initially, the support system was excellent, with a dedicated Navigator facilitating further testing and appointments and answering my questions. I had a lumpectomy within 6 weeks after diagnosis. However, post-surgery, a sense of abandonment arose. The Navigator changed jobs and was not immediately replaced.  I felt that support became scarce and abrupt, with one notable exception for the next 7 weeks. Finally, concerned about the lack of communication regarding upcoming appointments, I contacted the patient representative and an oncology visit was arranged for five days later. By the time the appointment arrived, my dominant emotions were anxiety, worry, anger, and frustration.
At the doctor’s office, I was given a COMPASS form to self-report on my physical, emotional, and practical well-being, among other topics. One piece of valued advice I received from a friend was to be honest with my care team, so I expressed my frustration about the perceived lack of support on the questionnaire. Upon reviewing the completed form, the attending nurse responded somewhat combatively, challenging my feelings and attributing them to factors beyond the clinic's control. I replied that the form's purpose was to self-report my fears and frustrations, which I did. Additionally, I pointed out the lack of a clear roadmap outlining what patients should expect and from whom. After a few tense minutes, the encounter concluded with an agreement to disagree. 
As a patient and educator, I recognize the complexity of healthcare provision and the multitude of perspectives involved. However, a fundamental principle of patient-centred care is to validate and address concerns, not dismiss them. If healthcare providers utilize tools like the COMPASS form, adequate training should be provided to ensure patients feel heard and supported.
Leaving the oncology appointment that day, I felt incredibly vulnerable—anxious, fearful, and doubtful. After much reflection, I realized that sharing my concerns was a valid response. My frustration stemmed from the inherent vulnerability we all feel when navigating the complexities of the healthcare system, especially when facing something as daunting as cancer. Patients deserve to be heard and understood.
I hope this anecdote encourages healthcare professionals to prioritize empathy and active listening, transforming fears and concerns into constructive dialogue. A little empathy in that moment would have saved everyone time and energy while leaving me reassured and better prepared to face my treatment journey. We can achieve the best possible health outcomes by prioritizing empathy and understanding each patient's unique needs.