Hi, I’m Vesna Stat #MakeMeCount
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If you were meeting someone for the first time, how would you describe yourself and what would you want them to know?
I always start with the fact that I’m a mom of three beautiful kids, a wife, dog mom and a nature lover. I’m very grateful for the life that I have. The cancer side of my story began when I was diagnosed with Stage 2b breast cancer at the age of 38, and despite having the standard treatment (surgery, chemotherapy and radiation), the cancer not only returned four and a half years later, but also spread quite extensively to both of my lungs, the vertebrae of my neck and in my lymph nodes. At that point, the cancer was considered incurable and I would be in treatment for the rest of my life, however long that would be. I was left asking why this happened and how often does this happen to other people with an early stage, treatable cancer?
Was cancer something that was in your mind throughout your life? Was it in your family or was it something that you thought about?
Unfortunately, cancer is part of my father’s family lineage, but we have no known genetic mutations. I lost my dad to lung cancer many years ago as well as my grandmother, uncle, and two cousins. I also had a great aunt who was diagnosed with breast cancer, so it was something that I was aware of but never thought it would happen to me, never mind as a young mom to three kids.
What was it like for you navigating the healthcare system with a breast cancer diagnosis? Did you see any differences in your experience with your initial diagnosis and then with your MBC diagnosis?
Well, my whole outlook changed with my MBC diagnosis. With my early stage diagnosis, I was cooperative and didn’t really question the doctor, even when some of her decisions didn’t sit right. I never really felt like I had a great relationship with her. It took me a while to get diagnosed with MBC because my symptoms were repeatedly mistaken for minor ailments. When I was finally diagnosed, I had a whole mind shift after being repeatedly dismissed and having my symptoms minimized. I felt like I didn’t have anything to lose by sharing my story and advocating for what I needed. I knew that now I was, quite literally, fighting for my life. So, at that point, I requested a new oncologist that I felt was better aligned with my needs. This, for me, was a turning point. I joined the caseload of a well respected, forward-thinking oncologist who was known for being up-to-date on the latests treatments. I started on the treatment that he recommended, hoping that it would control the cancer for as long as possible. That was seven years ago and I’m happy to say that the cancer continues to remain stable. Of course, there’s been ups and downs over the years, but for the most part, I consider myself very, very fortunate.
This experience makes me feel like my first dip into advocacy was when I made that decision to stand up for myself and request a new oncologist, because it changed the course of my experience with cancer. I don’t think I would still be alive had I not changed oncologists and started the treatment that he recommended at that time. That’s why I advocate for people to understand their cancer and work with a medical team that they feel aligned with. It’s so important to be an advocate for ourselves.
How does it make you feel to know that we don’t collect recurrence data and therefore don’t have a full picture of who is impacted by MBC?
It’s mind boggling to me, because you would think recurrence data would be the starting point; you need to understand the population in order to improve the outcomes. I’m at a loss to explain or understand why there hasn’t been an emphasis on this data collection and dissemination. We always talk about finding a cure… well, you’d have to understand as much as you can about the population in order to get to that point.
What do you want people to know or understand about your experience or MBC in general?
So much media attention is paid to “early detection saves lives,” and I recognize that this is a really important component of cancer care, but it doesn’t serve anyone to minimize the fact that some people – like me – still end having their cancer spread even when it’s found at an early stage. The generally accepted statistic is that an estimated 20 to 30% of people who have an early stage diagnosis will go on to have a metastatic recurrence. This is not an insignificant number of individuals, considering that one in eight women will be diagnosed with breast cancer. Breast cancer is an issue that impacts so many people – where is the urgency for a better understanding and treatment for recurrences? Don’t we want to know more about why this happens, who does it happen to, and then ultimately, how to reduce the incidence? That should be the foundation of our learning. “That which gets measured gets done” resonates deeply with me. Statistics drive everything; they dominate every aspect of our lives, including care and treatment plans for patients. We need as much media attention on this lesser known area of breast cancer to really move progress forward for everyone impacted.
What do you want to see change in the breast cancer space or the healthcare system in general?
It would be great to see cancer related organizations come together and prioritize data collection so that resources could be used more efficiently and effectively. Once we know more about the who, where and why people have a metastatic recurrence, we can personalize care more effectively so that people have a better quality of life and hopefully a better prognosis – just overall, better outcomes.
Is there anything else that you wanted to share?
Seven years ago, when I met my oncologist for the first time, he said that he didn’t know if this treatment was going to work, but this is what he thought would give me the best chance. And over the years, he often tells me that he’s following along, not necessarily knowing what will happen with the cancer and these treatments. The data hasn’t been collected in any meaningful way to drive progress forward faster. So I live in this unknown, but ever hopeful space. I hope that with more data and a better understanding of the metastatic process, patients can be matched to personalized treatments so that there’s less hoping and guessing and a better foundation to know that this is the best treatment for this patient. I would love to see that, because I think it would do so much to improve the quality of care, prognosis and outcomes for people with MBC.
— Vesna