LGSOC Awareness Day Shines a Spotlight on The Under-Researched Ovarian Cancer Subtype

Have you heard of LGSOC? If not, you’re not alone. Low-grade serous ovarian cancer (LGSOC) is a rare subtype of ovarian cancer that often goes unnoticed. But this September 9, we’re changing that narrative — and this year, we’re not doing it alone.

Why September 9? This day falls in the heart of Ovarian Cancer Awareness Month, giving LGSOC the attention it deserves. LGSOC day is a day dedicated to educating, empowering, and inspiring action against this oft-overlooked yet profoundly impactful form of ovarian cancer.

What started as a partnership between two organizations in 2024 has grown into something much bigger: a coalition of advocates, researchers, and support organizations united around ensuring no woman faces this rare cancer alone or uninformed.

LGSOC: The Diagnosis Challenge

LGSOC is a unique entity in the world of ovarian cancers. Unlike its more aggressive counterpart, high-grade serous ovarian cancer, LGSOC grows slowly. This characteristic, while seemingly positive, presents its own set of challenges.

The slow growth of LGSOC makes early detection difficult. Diagnosing LGSOC is also extremely challenging. It can take as long as 3 years to get an accurate LGSOC diagnosis. This lengthy diagnostic journey underscores the urgent need for improved awareness and detection methods.

LGSOC also tends to affect younger women. While the average age of diagnosis for high-grade serous ovarian cancer is 63, LGSOC often strikes women in their 40s, sometimes even younger. These are women in the prime of their lives, often balancing careers, raising families, and suddenly facing an ovarian cancer diagnosis.

Let’s break down some key points about LGSOC:

• Rarity: LGSOC accounts for approximately 2% to 5% of all ovarian cancers
• Age: The median age at diagnosis is 45, significantly younger than other ovarian cancers
• Growth: LGSOC is characterized by slow growth, which can make it challenging to detect early
• Treatment response: LGSOC often responds differently to standard treatments compared to other ovarian cancers
• Global impact: Worldwide, it’s estimated at least 65,000 people are living with LGSOC

Understanding these unique characteristics is the first step in improving outcomes for women diagnosed with LGSOC.

September 9 is LGSOC Awareness Day: A Growing Movement

Now, you might be wondering, “Why do we need a special day for LGSOC?” The answer is simple yet powerful: awareness saves lives.

When people are aware of LGSOC, they’re more likely to recognize its symptoms. And in the world of cancer, early detection can significantly impact treatment outcomes. It can mean the difference between a difficult journey and a more manageable one.

This year’s LGSOC Awareness Day represents remarkable growth from its inaugural year. What began in 2024 as a partnership between STAAR Low-Grade Serous Ovarian Cancer Foundation and Verastem Oncology has evolved into a genuine grassroots movement.

The coalition is now anchored by three major organizations, each bringing unique strengths:

STAAR Low-Grade Serous Ovarian Cancer Foundation represents the power of patient-led advocacy. Founded by three women — Alex, Bailey, and Jess — each diagnosed with LGSOC, STAAR launched as the first U.S.-based nonprofit dedicated specifically to finding effective treatments for this rare cancer.

Not These Ovaries brings urgency and transparency to LGSOC research funding. Founded by Emily Campbell and her husband Chris following Emily’s borderline ovarian cancer diagnosis at 33, we emerged from recognizing a critical gap: the rare forms of ovarian cancer affecting younger women had extremely limited research funding.

Verastem Oncology represents the research and development side, advancing breakthroughs in RAS/MAPK pathway-driven cancers and focusing on aggressive cancers that historically lacked effective targeted therapies.

But the movement extends far beyond these three organizations. This year’s coalition includes:

• The Sandy Rollman Ovarian Cancer Foundation
• Michigan Ovarian Cancer Alliance
• Sharsheret
• The Ovarian Cancer Project
• Let Every Woman Know-Alaska
• Partnership to Reduce Cancer in Rhode Island
• Tina’s Wish Foundation
• National Ovarian Cancer Coalition
• St. Louis Ovarian Cancer Awareness
• Wisconsin Ovarian Cancer Alliance
• LGSOC Initiative
• Unite For HER
• SHARE Cancer Support
• Foundation for Women’s Cancer
• Bay Area Cancer Connections
• World Ovarian Cancer Coalition

The impact of awareness extends beyond individual diagnoses. Awareness leads to increased funding, and funding is the lifeblood of research. Without adequate research, we remain stagnant in our fight against LGSOC. With it, we move forward, developing new treatments, improving diagnostic tools, and potentially discovering a cure.

The urgency of our mission becomes even clearer when we consider the recurrence rates of LGSOC. Studies show that over 80% of people treated for advanced-stage LGSOC will have their cancer return. This high recurrence rate highlights the critical need for more effective treatments and ongoing research.

Consider these facts:

• Research funding for rare cancers like LGSOC often lags behind that of more common cancers
• Increased awareness can lead to more clinical trials, giving patients access to cutting-edge treatments
• Understanding LGSOC’s unique characteristics can help develop targeted therapies, potentially improving outcomes

September 9 is our opportunity to change these statistics and bring LGSOC out of the shadows and into the spotlight where it belongs.

Beyond Awareness: Taking Meaningful Action

Understanding LGSOC is crucial, but knowledge alone isn’t enough. Action is where real change happens. So, what can you do to make a difference?

Visit LGSOCAwarenessDay.org

This year, we’ve created a central hub where you can find multiple ways to get involved. At LGSOCAwarenessDay.org, you can:

• Donate to support LGSOC research
• Sign up for volunteer opportunities
• Download social media templates and graphics
• Connect with partner organizations in your area
• Access educational resources about LGSOC

Donate to LGSOC Research

Yes, it’s a common request, but for a good reason. Research is expensive, and every dollar counts. The scientists working tirelessly to unravel the mysteries of LGSOC need resources to continue their vital work. Your donations directly fuel their efforts.

The need for action is further emphasized by the fact that treatment options for LGSOC remain severely limited. While 2025 brought the first FDA-approved treatment specifically for recurrent LGSOC patients with KRAS mutations, this breakthrough only benefits a subset of patients, leaving the majority with no FDA-approved drug options. This lack of comprehensive targeted therapies underscores the pressing need for continued dedicated research and drug development.

But what if financial contribution isn’t an option for you right now? Don’t worry, there are other impactful ways to help:

• Volunteer: Offer your time and skills to organizations focused on LGSOC research and support
• Educate: Share information about LGSOC with your network. You never know who might benefit from this knowledge
• Advocate: Use your voice to push for more LGSOC research. Write to your representatives, join advocacy groups, and make your voice heard

Remember, every action, no matter how small it may seem, contributes to the larger goal of improving outcomes for women with LGSOC.

Not These Ovaries: Committed to LGSOC Research

At Not These Ovaries, our commitment to LGSOC research serves as our driving force. We believe that focused research is the key to unlocking better treatments, improved diagnostic tools, and, ultimately, better outcomes for women with LGSOC.

We’ve already funded groundbreaking studies on borderline ovarian cancer and low-grade serous ovarian cancers at Dana-Farber Cancer Institute, addressing the urgent need for better surveillance and treatment options. 

Donations have also enabled us to establish a dedicated Gynecologic Oncology Research Supervisor position at Mount Sinai Medical Center to accelerate research and expand clinical trials. This crucial role leads the world-class institution’s low-grade ovarian cancer program, helping accelerate research and expand clinical trials.

Most recently, we partnered with STAAR to award $115,580 to MD Anderson Cancer Center for innovative research that aims to personalize treatment approaches for LGSOC patients.

Make a Difference On LGSOC Day

LGSOC Awareness Day on September 9 is our call to action. By understanding symptoms, supporting research, and spreading awareness, we can make a real difference.

Women diagnosed with LGSOC today face a very different landscape than those diagnosed just a few years ago. They’re entering a community of advocates, researchers, and supporters who understand their specific challenges and are working urgently to improve outcomes.

Visit LGSOCAwarenessDay.org to find ways to contribute that match your interests and availability. Whether you’re a patient, family member, healthcare provider, researcher, or simply someone who believes rare diseases deserve attention and resources, there’s a place for you in this growing community.

Every contribution, whether it’s sharing information, donating, or advocating for research, brings us closer to better treatments and earlier diagnoses. Together, we can improve outcomes for those affected by LGSOC and work towards a future where this disease no longer threatens lives.