Coping with LGSOC: Balancing Treatment and Well-Being

Coping with LGSOC (low-grade serous ovarian cancer) presents a unique set of challenges for the thousands of women diagnosed each year. 

This rare subtype of ovarian cancer often affects younger women, with a median age of diagnosis around 45, though it can occur as early as the 20s and 30s. Recent research has shed light on the profound impact of LGSOC on patients’ lives, emphasizing the need for comprehensive support and coping strategies to maintain quality of life with LGSOC.

The LGSOC Landscape: Understanding the Challenges

A global survey conducted by Verastem Oncology provides crucial insights into the lives of women with LGSOC, as well as into the emotional, physical, and social toll of the disease.

One of the most striking findings was that 87% of respondents reported being afraid to make long-term plans due to concerns about a potentially shorter lifespan. This pervasive uncertainty can significantly impact mental health and quality of life with LGSOC. Additionally, 94% of those surveyed expressed worry about their LGSOC returning despite treatment, highlighting the ongoing anxiety (and scanxiety) many patients face.

The Physical Toll: More Than Just Side Effects

LGSOC and its treatments can cause a range of physical symptoms that significantly impact daily life. 

The Verastem survey found that 84% of respondents reported that treatment side effects had negatively impacted their emotional well-being. Common side effects include fatigue, joint pain, and menopausal symptoms, which can be particularly challenging for younger women.

LGSOC often requires chronic medication use, which can lead to long-term side effects. Managing these symptoms is crucial for maintaining quality of life with LGSOC. 

To cope with physical symptoms, patients often benefit from regular exercise tailored to individual capabilities, proper nutrition, and adequate rest. Many find complementary therapies like acupuncture or massage helpful, though it’s essential to consult a physician before trying new treatments. Open communication with healthcare providers about symptom management is key to improving quality of life with LGSOC.

Navigating Emotional and Mental Health

The Verastem survey highlighted the significant mental health impact of LGSOC, with 73% of respondents reporting negative effects on their mental health. Anxiety, depression, and post-traumatic stress disorder (PTSD) are common among cancer patients, and LGSOC is no exception.

The emotional toll of LGSOC can be as challenging as the physical symptoms. Integrating mental health support into ovarian cancer treatment plans is crucial. 

Effective strategies for maintaining mental well-being include seeking professional mental health support and participating in support groups specific to LGSOC. Many patients find practices like mindfulness and relaxation techniques helpful in managing stress and anxiety. Regular physical activity, when possible, can also boost mood and overall mental health.

Balancing Career and Treatment

The Verastem survey revealed that 68% of respondents reported a negative impact on their jobs or careers due to LGSOC. Balancing work commitments with treatment schedules and unpredictable health can be challenging. 

Understanding rights under the Americans with Disabilities Act and exploring flexible work arrangements with employers can help manage these challenges. Some patients find that part-time or remote work options during treatment help maintain a sense of normalcy and purpose.

Fertility and Family Planning

For many young women with LGSOC, fertility preservation is a significant concern. The Verastem survey found that 60% of respondents reported a negative impact on their plans to start a family or have more children.

Early discussions about fertility preservation options are crucial for young women diagnosed with LGSOC. While treatment may affect fertility, there are often options available if addressed early. 

These options include egg or embryo freezing before treatment, ovarian tissue cryopreservation, and exploring surrogacy or adoption. Early discussions with oncologists about fertility-sparing surgical options can also be beneficial for some patients.

Navigating Relationships and Social Support

The impact of LGSOC extends beyond the individual, affecting relationships with partners, family, and friends. The Verastem survey found that 46% of respondents reported negative impacts on their romantic relationships, while 32% noted negative effects on relationships with family and friends.

Maintaining healthy relationships often requires open and honest communication about needs and feelings. Involving partners or close family members in treatment decisions can foster understanding and support. Many patients and their loved ones find that support groups or couples counseling provide valuable tools for navigating the challenges of LGSOC together.

Looking Ahead: Advances in LGSOC Treatment

While coping with LGSOC presents significant challenges, ongoing research offers hope for improved treatments and outcomes. Clinical trials are exploring targeted therapies, including MEK inhibitors and cyclin-dependent kinase (CDK) inhibitors, which show promise in treating LGSOC.

Research participation is crucial for advancing LGSOC treatment. Clinical trials not only offer access to potentially groundbreaking treatments but also contribute to our understanding of LGSOC, potentially benefiting future patients. 

Patients interested in clinical trials should discuss options with their oncologist and research ongoing trials through resources like ClinicalTrials.gov. Understanding the potential risks and benefits of trial participation is crucial for making informed decisions about treatment options.

Advocating for LGSOC Awareness

Supporting LGSOC awareness and research funding can be an empowering way to cope with the disease.

Raising awareness about LGSOC is crucial for early detection, driving research, and providing support for those affected. Many patients find that sharing their stories (if comfortable) and participating in LGSOC-focused events and fundraisers provide a sense of purpose and community. Supporting Not These Ovaries, STAAR, LGSOC Initiative in New Zealand, and other organizations dedicated to LGSOC research and patient support can also be a meaningful way to contribute to the broader LGSOC community.

Coping with LGSOC requires a multifaceted approach that addresses physical, emotional, and social challenges. By combining evidence-based coping strategies, ongoing medical advancements, and strong support networks, women with LGSOC can navigate their journey with resilience and hope. While the path may be challenging, with the right tools and support, it’s possible to maintain a good quality of life while living with LGSOC.