 September is Ovarian Awareness Month, which means it’s time for STAAR’s Step Up America Campaign, the most impactful awareness and fundraising program we execute together all year. It is our biggest fundraiser, where we bring in the vast majority of our donations. Why do we need more awareness and funding for LGSOC? We know from hearing from STAAR members and the landmark survey of 180 people across 10 countries that we were part of in 2023 that while we are making progress, we need to keep up the momentum of awareness, research and support. This survey alone found that for the majority of patients it took an average of nearly three years to get an accurate diagnosis, with many experiencing misdiagnoses or having their symptoms initially dismissed by a healthcare provider. And there are still no FDA approved medicines specific to LGSOC. What has STAAR accomplished with the help of fundraising? Since STAAR’s founding in 2020, we have made major strides in connecting the LGSOC community in the United States and with our partners globally.
None of this could have happened without the contributions of our founders, our Board, our volunteers, our industry partners and family, friends and others living with LGSOC who have donated their time or funding to help our progress. Why should I get involved? In order to make more progress against LGSOC and to support those living with it, significantly more research and awareness is needed. STAAR is the first advocacy group in the United States to focus on LGSOC by funding research to provide better outcomes, and offering resources and a place to connect. And STAAR is 100% volunteer-run, meaning more of every dollar goes directly to the mission. How can I provide support? Fundraising, Donations, Employer Matches and Volunteering, including our Step Up campaign, which is in full swing for September, at any level are all deeply appreciated. Throughout the month, we support individuals in creating their own events to fundraise for research and spread awareness about LGSOC symptoms. We welcome events as large as a city-wide 5K and as small as a group of friends getting together for coffee. This year we also have the virtual Step Up America Step Challenge, creating an easy way to participate for those who can't host an event! All participants can also order a Step Up T-Shirt with common LGSOC symptoms on the back to help spread awareness! AuthorLisa Buffington is a patient advocacy consultant and volunteer with STAAR Ovarian Cancer Foundation.
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 After I finally got my diagnosis of LGSOC at age 27, I called every doctor that either misdiagnosed me or didn't take my symptoms seriously. Though many of them were afraid that I was threatening to sue them, I was not. I was pissed and I wanted them to know it. I was pissed that they didn't take me seriously, that they wasted my time and that they had caused me a level of trauma that I couldn't even process at the time. I wanted them to know about my real diagnosis and warn them to take young people seriously in the future. Many of us in the low-grade community have experienced gaslighting from medical professionals or a surprising lack of access to qualified specialists (or those who will at least admit that they are not the qualified specialist and make an appropriate recommendation). It's easy to blame doctors. I feel like I was in a cycle of bashing doctors and blaming the medical system for my situation when really it was not their fault that I had cancer. It’s maybe not even their fault that they had missed my cancer. I will say, it is their fault that they didn't take me seriously and that they made me feel like I was making symptoms up or that I was being dramatic for pushing for more answers. But I recognize now that I was outside the norm of the patients they usually see. Many months after my diagnosis, a friend from an ovarian cancer support group shared an analogy that she had heard: “When you hear hoofbeats, think horses not zebras.” Doctors go to medical school and they learn about all of the common symptoms of common ailments. They're trained to have an ear for specific symptoms to recognize general diseases or conditions. They learn that typically when someone has a set of symptoms or experiences, that's going to lead to a clear diagnosis. If they’re not specialized in a very specific area like gynecologic oncology, requiring a million more years of schooling, they're not necessarily trained to consider what could present beyond the norm. Now again, I'm not saying they shouldn't recognize when they don't know something and make the appropriate recommendations—they should. But this analogy helped me understand where doctors are coming from and it has helped me heal from the horrible experiences leading up to my diagnosis. It’s also motivated me to continue to spread awareness about LGSOC even amongst the medical professionals who we trust with our health. Back to the analogy. Doctors are trained to listen for specific symptoms and attribute them to a common condition. If a doctor hears trotting in the hallway but can’t see anything, most likely it's going to be a horse. Very, very rarely, they might open the door and see a zebra. But without the extra step of looking, the two could sound exactly the same. Most likely, it's going to be a horse and so to treat the widest pool of patients, doctors aim to treat the ailments of the horse. It makes a lot of sense—most of the time it probably is IBS or whatever other condition they attributed our cancer to. It’s so unlikely to be something as serious as cancer. When you hear hoofbeats, think horses not zebras. If doctors take the next step to find out more—maybe that’s sending you to another doctor who has special tools that allow them to see into the hallway without a window to notice that the animal doesn’t quite look like a horse--they can consider and then rule out other suspicions. In my opinion, we’re not even zebras. We’re unicorns. Low-grade serous ovarian cancer is even more rare and unlikely to be the cause of the hooves trotting down the hallway, because we’re young and usually otherwise “healthy.” If you know me, you know it’s taken a lot for me to forgive and move on from medical gaslighting and trauma. It’s still hard for me to trust professionals. Thinking about it in a new way has helped give me a different perspective. AuthorEllie Habib is a STAAR Board Member. She was diagnosed with stage 3C LGSOC in January 2021 at age 27.  I’m the friend Nicole referred to in this blog post, the one who learned of a likely recurrence right before my 4th surgeversary. I was diagnosed April 1, 2020, and celebrate that each year with cake because that’s a clear anniversary of a day something happened. On March 31, I didn’t know I had cancer. On April 1, I did. Some people say they celebrate the day they found out they had cancer because that’s the day their lives were saved. As I’ve ticked off the number of years I had no evidence of disease (NED), I used the anniversary of my surgery, June 22, 2020. That was the day all my tumors were removed, but I didn’t really know I was NED until CT scans months later showed no signs of cancer. On June 19, 2024, my CT scan showed a 17 mm ovoid mass near my bladder, described by the radiologist as “highly concerning for metastatic disease.” So I couldn’t very well celebrate being 4 years NED, could I? For me, this is a solid argument for celebrating (or commemorating, if the word celebrating feels inappropriate) the date of diagnosis. That date won’t change. I had all my reproductive organs removed. How is a recurrence possible? I’m not that surprised by what I’ve started calling “my little recurrence.” More than 80% of people with low-grade serous ovarian cancer experience a recurrence. I tempted fate by ceasing to take an aromatase inhibitor to block the production of estrogen. This is the standard of care for LGSOC treatment, but I was experiencing unbearable hand pain as a side effect. After discussing it with my doctor, I stopped taking the hormone blocker Letrozole. As soon as I got my CT results, I restarted taking Letrozole, and the plan is to rescan in three months to see if it has any effect on my little recurrence. If there’s anything left to remove, I’ll have another surgery. Once that’s done, I hope to restart my NED clock. I’ll have a new surgeversary to count my years without visible cancer. Living with Uncertainty In addition to wondering whether to celebrate some kind of cancerversary, people with ovarian cancer also struggle with whether to call themselves survivors, or even whether to say “I have ovarian cancer,” or “I had ovarian cancer.” During the time I had no visible disease, I took to using the phrase, "Life after LGSOC," to describe my situation in my social media bios. In the days following my CT scan report, I revised them to "Living with LGSOC." Many of us feel like we always will be living with the disease, even when we have no sign of it. Last year's survey of people with LGSOC found that most of us consider living with the uncertainty of a recurrence is one of the biggest challenges we face. Which brings me back to cake. Whether you take inspiration from The Cancer Patient's Hall of Fame cakes and have a sheet cake decorated with a quip like "Not dead yet," or "Good job not dying," or whether you buy yourself a cupcake when you remember, "Oh yeah, today is the anniversary of my second chemotherapy," as far as I'm concerned, there's never a bad time to celebrate with cake. AuthorKari Neumeyer is STAAR Vice Chair—Marketing & Communications. She was diagnosed with LGSOC in 2020. |
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