The Importance of Being Your Own Advocate: A Personal Journey
Aleksandra
State: Florida
Congressional District: FL17
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Diseases
Cancer
Issues and Challenges
Aleksandra has encountered: Access to Expert Providers, Surprise Billing, Discrimination (nonmedical), Gaslighting, Transparency in Health Care
My Story
The Importance of Being Your Own Advocate: A Personal Journey
In 2015, I heard three words that would forever change my life: “You have cancer.” I was diagnosed with invasive ductal carcinoma (IDC) at the age of 42, a diagnosis that marked the beginning of my journey as both a survivor and a patient advocate. My story began several years earlier when I first experienced discomfort in my right breast. At the time, mammogram guidelines were less proactive than they are today, recommending yearly screenings beginning at age 45 (ACS, 2015). However, due to my family history and the pain I was experiencing, I began getting mammograms at 38. I was fortunate to have a great primary care doctor who listened to my concerns. The first signs of discomfort appeared in 2011, one year after I stopped breastfeeding my second child. A mammogram showed no signs of malignancy but revealed dense breast tissue and multiple cysts. The doctors reassured me that the pain was likely related to these benign changes - nothing to worry about. Despite the negative results, my discomfort persisted, gradually becoming more severe. My doctors continued to attribute it to hormonal changes and cysts, but deep down, I knew something wasn’t right. I trusted my body.
By late 2014, the pain had worsened to the point where it was affecting my daily life. I kept up with my regular clinical exams, mammograms, occasional ultrasounds, and even an MRI, the latest of which had been just six months before my diagnosis. All of these screenings came back negative for malignancy. But the pain didn’t go away. It only grew worse, accompanied by weight gain and other hormonal changes. Then, in April 2015, after a mammogram with CAD, for the first time, my scans showed “suspected malignancy.” At that moment, I felt, both, disbelief and a strange sense of relief. My concerns were validated. I was referred to a surgeon for a biopsy. However, once again, my concerns were dismissed. I had to change surgeons and request a second opinion to be taken seriously and get the biopsy I needed.
The pathology report confirmed that I had breast cancer, stage 2, with a tumor already 3 cm in size. Turns out, I wasn’t “too young to have cancer”. In hindsight, I realized that the tumor had likely been there for some time before I was diagnosed. It was my persistence, my refusal to accept the status quo, that ultimately led to a diagnosis. Even my surgeon, just before the biopsy, told me that pain was not a typical symptom of breast cancer. Later, I would learn that a certain percentage of breast cancer cases are, in fact, associated with breast pain.
As a former nurse, I already understood the importance of being informed and proactive in healthcare. This knowledge gave me a sense of confidence in approaching my diagnosis, but it also made me realize that navigating the complex healthcare system isn’t always straightforward. Despite my knowledge, I still had to advocate fiercely for myself. I had to navigate a “standard of care” that didn’t align with my lifestyle or personal health goals. I took the time to educate myself and get more information before I decided on treatment options.
I was advised to have a lumpectomy, but I knew that for my peace of mind and future health, I wanted a double mastectomy with reconstruction – particularly to potentially avoid radiation, if there was no lymph node involvement. I scheduled an appointment with a local plastic surgeon to discuss reconstruction at the time of the mastectomy. A little bit I knew about my options back then…
Through this process, I’ve come to realize that knowledge goes beyond understanding medical options—it’s also about recognizing our rights as patients and realizing the importance of our voices in the decision-making process. When faced with a serious diagnosis, it’s easy to feel powerless, but I discovered that a small shift in perspective, and trusting my instincts, could change everything. I worked with my doctors to develop a treatment plan that was personalized to me, not based on a one-size-fits-all approach. For that, I will be forever grateful. I was even given the option to opt out of chemotherapy and de-escalate my treatment plan after my doctor did some additional testing. The hysterectomy did not align with my goals and the possibility of becoming pregnant again. Having a baby girl has always been my wish (besides already having two boys). I was supposed to take a hormone-blocking pill for 10 years, though I stopped after 18 months due to unbearable side effects. The key to my positive experience was having supportive, attentive physicians who truly listened and supported me. That’s when I realized how important patient-centered care is. Therefore, patient advocacy became my passion.
As I continued my journey, I began connecting with other survivors and hearing their stories. Finding community became one of the most valuable aspects of my recovery. I realized that I was not the only one facing obstacles in care. I’ve had the privilege of facilitating support groups, organizing meetups, and helping to create a network for people facing similar challenges. Being part of a group where others truly understand your struggles is incredibly healing. That’s what led me to establish the Pink Mermaid Foundation, a community dedicated to supporting both, survivors and thrivers.
In my work as a community builder, I’ve witnessed the profound power of shared experiences. When people come together, they find strength, renewed hope, and confidence. It’s a reminder that healing is not just physical, but emotional, social, and psychological as well. Being part of a group that truly understands your struggles helps you feel less isolated and more empowered. Support groups offer spaces for people to share, learn, and grow together.
The moral of my story is simple: be your own advocate. You know your body better than anyone else, and if something doesn’t feel right, don’t stop asking questions until you find the answers. Early detection is crucial, and sometimes, it’s the patient’s perseverance that makes all the difference. Trusting your instincts, demanding the right care, collecting all resources, finding support from others, and connecting with those who understand your experience can save your life. Cancer doesn’t discriminate.
My Motivation and Inspiration
Losing my grandma to metastatic breast cancer when I was just 12 years old was one of the most defining experiences of my life. It was the reason I decided to go to medical school. It wasn't just the grief that was painful, but the agonizing way she passed that left a lasting mark on me. At that young age, I couldn’t fully grasp the complexities of her situation, but as I grew older, I began to realize how much the system failed her and so many others. Her struggle was also the reason I began preventive screenings earlier.
Through my involvement in support groups, I learned that, despite decades of awareness and progress, not much has changed in the last 40 years. Financial barriers, inadequate insurance coverage, and policies riddled with loopholes still force many women to make impossible choices between their health and financial stability. Women continue to face the same barriers to care, the same lack of support, and the same frustrations in navigating breast cancer treatments.
The disparities in care are what drove me to become a patient advocate. No one should have to suffer in silence or feel neglected by a system that was meant to offer support. The lack of access to treatments, the inequities in healthcare, and the gaps in knowledge are issues that cannot be ignored. Women deserve better care—they deserve to have their voices heard. By becoming a patient advocate, I hope to provide support and empower women to make informed decisions about their health, so they don’t have to face these challenges alone.
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