cancer survivorship

Cervivor at SGO 2025: Amplifying the Survivor Voice in Gynecologic Cancer Care

On March 14th, 2025, Cervivor had the incredible opportunity to host a table at The Foundation for Women’s Cancer – Patient and Advocate Education Forum, part of the Society of Gynecologic Oncology (SGO) 2025 Annual Meeting on Women’s Cancer in Seattle. This event brought together patients, survivors, caregivers, and advocates for a powerful day of education, connection, and advocacy.

The forum featured leading medical professionals who shared the latest breakthroughs in gynecologic cancer care. One of the highlights of the day was the Patient Advocacy and Empowerment Panel, where national and local patient advocates shared their lived experiences, offering hope, support, and practical strategies for making an impact in the cancer community.

Among the panelists were Selena Rushton, National Cervical Cancer Coalition Pacific Northwest Chapter Leader, and Arlene Simpson, a dedicated Cervivor community member. Each brought a unique and powerful perspective to the discussion.

Selena Rushton shared her journey of living through stage 4 cervical cancer, a diagnosis with an often daunting five-year survival rate. She spoke about the incredible resilience it took to overcome the odds and how, after fighting for her life, she found a renewed sense of purpose through advocacy. Selena has since used the skills she gained in her corporate career to amplify awareness, educate others, and support fellow survivors. Her story is a testament to the strength and determination of cervical cancer survivors, proving that even in the face of the most challenging diagnosis, hope and impact are possible.

Arlene Simpson, also a dedicated member of the Cervivor community, shared her deeply personal journey. Despite growing up in a family filled with medical professionals, Arlene had never heard about HPV until she was diagnosed with cervical cancer. She spoke about the guilt and shame she initially felt—emotions many survivors experience due to the stigma surrounding this disease. However, through finding a supportive community like Cervivor, she was able to reclaim her voice, break the stigma, and turn her experience into advocacy.

Arlene’s Story:
Sharing my story was not easy coming from a very strict and disciplined family. Once my treatment was over, many questioned my decision to share my personal story in public. The reason I share my story is because of those who are afraid, unseen, or unheard. I want to be a familiar face and voice to someone who relates to me. Being one of the very few Asian Americans in Cervivor, I feel it’s very important for me to amplify my voice so others will know they are not alone in this fight. 

It was a humble experience being in a panel with other gynecologic cancer survivors. We all had our unique stories but, what brought us all together was being united in our mission to help other patients and medical professionals understand that the patient’s voice, the patient’s stories, and their cancer treatment choices and decisions are crucial in these types of medical conferences. 

It’s much more than being just a number in a report. We are living proof of the treatment, trials, and patient care that our cancer care teams provide. We provide the invaluable piece of the puzzle that one cannot get from a medical report alone. We are the HEART that beats or stops beating. Our voices matter!

At the Cervivor table, we had the privilege of connecting with survivors, caregivers, and advocates, sharing our mission of education and empowerment. The conversations we had reinforced the importance of sharing our stories, raising awareness, and advocating for better prevention, treatment, and survivorship care.

Mechal, Anna, and Arlene at the Cervivor exhibition table.

Beyond the panel discussions, attendees explored essential topics like managing treatment side effects, integrative medicine, and sexual health—critical issues that often go under-discussed but have a significant impact on quality of life.

A Powerful Story of Advocacy and Care

Another unforgettable moment at SGO 2025 was Aisha McClellan’s powerful speech, delivered on the main stage during the conference’s opening session—a moment that truly set the tone for an impactful and inspiring event.

Aisha took the stage alongside her oncologist, sharing her journey through diagnosis, the importance of finding an oncologist who truly cares, and the power of patient advocacy. She opened up about the challenges she faced early on, where she was met with dismissive care teams who assumed she would not survive. But Aisha refused to accept that fate. She fought tirelessly to be heard, advocating for herself across multiple hospitals until she finally found an oncologist who stood by her, fought for her, and ultimately saved her life.

Aisha’s story was raw, emotional, and deeply moving, highlighting the critical role of patient-centered care and the life-saving impact of advocacy. Her words resonated deeply with the audience, and by the time she finished speaking, the entire room was on its feet, giving her a standing ovation—a moment of recognition for her strength, resilience, and the powerful message she delivered.

The Power of Survivor Voices in Research & Clinical Care

One of the most powerful moments of the event was during the final session, where I was deeply moved by the recognition of patients and survivors as essential voices in clinical trials, research, and daily hospital operations. Seeing researchers, oncologists, and healthcare professionals actively listening and valuing the lived experiences of survivors reinforced the progress we are making in patient-centered care. It was a reminder that our voices matter—not just in advocacy spaces, but in shaping the future of gynecologic cancer care itself.

Why Events Like SGO Matter

Gynecologic cancers, including cervical cancer, don’t just affect individuals—they impact families, communities, and the healthcare landscape as a whole. The SGO Annual Meeting provides a vital platform for survivors and patient advocates to be at the table with researchers and clinicians, ensuring that the patient perspective is heard loud and clear.

As Cervivor continues to advocate for eliminating cervical cancer and improving survivorship care, we encourage all survivors to share their stories—because they truly matter. Every story has the power to inspire, educate, and spark change.

Were you at SGO 2025? We’d love to hear about your experience! Share your thoughts in the comments or reach out to us at [email protected]. Together, we are stronger.

About the Authors

Anna Ogo is a passionate cervical cancer survivor, and Cervivor Ambassador from Kent, Washington. Diagnosed with cervical cancer in 2021 after a routine health check, Anna faced her diagnosis with resilience, undergoing a radical hysterectomy, radiation therapy, and IVF for fertility preservation. Now a proud mother through surrogacy, as well as a loving dog and cat mom, Anna serves on the leadership team of the HPV Free Washington Taskforce. A 2022 graduate of Cervivor School, where she learned how to turn her experience into advocacy, Anna channels her journey into raising awareness about HPV, its vaccine, and the importance of early detection. Anna shares her story to inspire change, empower others, and promote accurate information about cervical health.

Arlene Simpson is a cervical cancer survivor and advocate residing in Bothell, Washington. She was diagnosed in September 2021 and underwent external radiation, chemotherapy, and Brachytherapy. She will be 3 years with no evidence of disease (NED) come March 2025. Arlene is a loving mom, a devoted wife, a Financial Services professional, and a dedicated leader in her church. She is very passionate about helping others and giving back to her community by volunteering in various ministries where she shares the importance of the HPV Vaccine, getting annual exams and pap tests, and sharing her story to raise awareness, especially in the Asian-American communities. She believes that being part of a community (like Cervivor) that understands and cares, along with having strong faith and a positive mindset, has gotten her through the many challenges in her cancer journey.

Navigating Intimacy After Cervical Cancer: Facts, Tips, and Real Talk to Get Your Sexy Back

Cervical cancer is a life-altering diagnosis that affects more than just physical health—it can deeply affect emotional well-being and intimate relationships. From the emotional toll of a serious diagnosis to the physical changes that disrupt intimacy, it can challenge both self-identity and personal connections. Unfortunately, many survivors navigate this journey alone—whether due to discomfort in discussing such a personal matter or simply a lack of information and trusted resources.

During two interactive sessions at Cervivor’s recent Cervical Cancer Summit—one focused on intimacy after cervical cancer and the other on navigating menopause with confidence—participants felt safe enough to openly shared their experiences and concerns in a supportive space. Here is just some of what they said:

“I no longer feel like a woman. I’m disconnected from my sexual self, and I don’t know how to get it back. My recent pelvic exam caused days of bleeding, and I get a UTI with most insertions.”

“No one talks about the sex part of cervical cancer. My doctor just handed me a box of dilators with no explanation on how to use them or how often.”

“I didn’t know about any of this until Cervivor. It still has not been a conversation topic with my medical team unless I talk about it with them.”

These honest reflections highlight the need for open conversations and greater awareness—including, in some cases, among medical professionals. Whether you’re undergoing treatment or navigating recovery, understanding the facts and exploring new ways to connect can empower you to rediscover what feels good for you and regain confidence in your intimate life. It can also help you navigate intimacy with a current or future partner. Acknowledging the impact of cervical cancer on intimacy and relationships—and seeking out support and strategies for maintaining connection—can strengthen bonds and enhance overall well-being.

How Cervical Cancer Impacts Intimacy

Surviving cervical cancer is a triumph, but it often comes with a host of lasting physical and emotional challenges. For many survivors, it’s a case of “I survived, but no one prepared me for this.” These challenges can profoundly affect intimacy, touching both the body and the mind in ways that can feel overwhelming and isolating.

While the emotional and physical tolls of cervical cancer are unique to each person, they often manifest in two key areas: the physical changes resulting from treatment, and the emotional shifts that affect a person’s sense of self and connection to others.

Cervical Cancer Survivor and Cervivor Community Member Amanda Hunter

Physical Impact
Treatments for cervical cancer can lead to a variety of challenges that make physical intimacy difficult. These include vaginal dryness, pelvic pain, and changes in sexual sensation—issues that can significantly affect a person’s ability to engage in or enjoy sexual activities. This is expressed powerfully by Cervivor community member Amanda Hunter: “I have changed after my cancer diagnosis and treatment, and I don’t know how to fix it. The main thing I regret is having my hysterectomy. I no longer feel like a woman because of it, and I am angry. I had just found the love of my life and married him—I absolutely adore my new husband. There was a time I couldn’t keep my hands off of him. But now, between the physical changes from the hysterectomy that have completely altered the feeling of sex, to the loss of hormones from radiation killing my ovaries and the menopausal symptoms that come with it, I am spending our second wedding anniversary feeling guilty because I never want to have sex anymore.”

Emotional Impact
The diagnosis and treatment of cervical cancer can also take a significant emotional toll. The stress of facing cancer and undergoing treatment can trigger anxiety, depression, and concerns about body image. These emotional shifts can affect sexual desire and impact overall intimacy and connection with one’s partner.

Cervivor Ambassador Ana Reyes shares her physical scars from treatment.

Sage Bolte, PhD, LCSW, CST, FAOSW, Chief Philanthropy Officer and President of the Inova Health Foundation, and a 22-year oncology social work professional, was the keynote speaker at the Summit session on intimacy. She shared, “Getting here required, and I know many of you experienced, much loss and grief. There needs to be space to honor that. This doesn’t mean dwelling in sadness, but if we don’t acknowledge what’s lost, we can’t celebrate what’s gained or learned, nor can we learn something different.”

Research confirms what many survivors have shared. Studies indicate that up to 50-70% of women who undergo treatment for cervical cancer experience changes in their sexual function. These changes can include reduced libido, discomfort during sex, or altered sexual satisfaction. Addressing these challenges is essential for maintaining healthy relationships and overall well-being during and after treatment. But, regardless of relationship status, navigating intimacy can be a unique journey for each woman.

Sage offers hope: “You may think, ‘I’ve completely lost interest in sex. My libido is totally gone.’ But libido starts in the mind. Wanting to want to means you still have libido and interest. Give it time and space. The beauty is that you’re going to get to know your body all over again. And figuring out what feels good is very important, whether you have a partner or not.”

Redefining Intimacy

Intimacy is often misunderstood as being solely synonymous with sexual activity, but in reality, it encompasses a broad spectrum of connections that can deepen and enrich relationships. This allows couples to explore and express their bond in various ways, creating a stronger and more resilient connection. The following aspects highlight the diverse landscape of intimacy:

Emotional Closeness: Sharing thoughts, fears, and hopes builds a deep emotional bond. This deep emotional bond is nurtured when partners feel comfortable opening up to each other, creating a safe space for vulnerability and trust. Sharing personal feelings, desires, and anxieties can bring partners closer together, fostering a sense of mutual understanding and support. It can be cultivated through regular, meaningful conversations, active listening, and empathy, ultimately strengthening the relationship.

Physical Touch: Sage emphasizes that the mind is the most important organ in sparking intimacy, while the skin is the largest one. Simple gestures like holding hands, cuddling, or offering gentle massages can foster closeness and provide comfort without the pressures of traditional sexual activity. These acts of physical affection help release oxytocin, often called the “love hormone,” which promotes feelings of bonding and attachment. Physical touch, particularly during stressful times like cancer treatment and recovery, can be a powerful way to express love and care.

Shared Experiences: Shared experiences play a vital role in intimacy, as they provide opportunities for couples to spend quality time together. This can be achieved through various activities, such as engaging in conversation, sharing hobbies, or simply enjoying quiet moments together. These shared experiences can help both partners feel connected, creating a sense of togetherness and unity. Whether it’s cooking a meal, watching a movie, going for a walk, or practicing a hobby, the time spent together can strengthen the bond between partners, fostering a deeper sense of intimacy and connection.

5 Tips for Nurturing Intimacy

Many community members have shared their experiences with receiving a bag or box of dilators after brachytherapy (internal radiation) without a clear explanation of their importance for maintaining pelvic floor health and keeping the vaginal canal open post-treatment. Unfortunately, some have not been as fortunate and have experienced their vaginal canals fusing together. On the other hand, many have received the necessary education, engaged in open dialogue with their care team, and are achieving tremendous success in their post-treatment phase. Cervical cancer survivor Samantha wholeheartedly recommends dilating and shares in her Cervivor Story: “Your sex life does not have to be over after this! In some cases, it’s physically impossible, and I understand that. But for the vast majority of us, with consistent dilation, pelvic floor therapy, and lube, we can repair vaginal tissues and have a sex life again.”

It’s essential to remember that you matter and should never hesitate to advocate for yourself. The following tips can help you navigate the challenges of intimacy after cervical cancer treatment:

  • Open Communication: Discuss your feelings, needs, and concerns with your partner. Honest dialogue can help both of you navigate the physical and emotional challenges together.
  • Explore Alternative Forms of Connection: If traditional sexual activity is uncomfortable, consider non-sexual forms of intimacy like cuddling, massage, or simply spending quality time together. Redefining what intimacy means for you can pave the way for a deeper connection.
  • Seek Professional Support: Professional counselors, therapists, or sexologists with experience in cancer care can offer strategies tailored to your situation, including interventions like pelvic floor therapy or sexual counseling to address specific concerns.
  • Prioritize Self-Care: Engage in activities that promote overall well-being. Exercise, mindfulness practices, and self-compassion can improve your mood and self-esteem, making it easier to embrace intimacy.
  • Educate Yourselves: Understanding the potential side effects of treatments can help set realistic expectations. Trusted sources like the National Cancer Institute and the American Cancer Society provide comprehensive information on managing these challenges.

Products and Resources for Sexual Health

The following products and resources can help patients and survivors manage sexual health challenges:

Pictured: Soul Source Silicone Vaginal Dilators

  • Dilators: Are used to moisturize, stretch and strengthen for overall vaginal health. Products like Soul Source or Intimate Rose are popular due to the silicone material. Typically recommended use of 3-5 times a week at 5-20 minutes.
  • Depth Control Devices: Like Ohnut to help you control depth and alleviate pain.
  • Lubricants: Water-based artificial lubrication (paraben and glycerin-free) like Sliquid, Slippery Stuff, and as an alternative, coconut oil.
  • Vaginal Moisturizers: Like Replens, Good Clean Love, and Aloe Cadabra to provide relief for vaginal dryness and discomfort.
  • Pelvic Floor Therapist Referral: A specialist for retraining and strengthening pelvic floor muscles. Additionally, Cervu Health offers pelvic therapy solutions for female cancer survivors. If you experience chronic pelvic pain or discomfort during sexual activity (dyspareunia), consider participating in their research study to help develop a treatment device for women facing similar challenges.

It’s essential to understand the difference between moisturizers and lubricants, as well as the importance of maintaining the vagina’s natural pH balance. Hormonal changes, radiation, and chemotherapy can affect the vagina’s pH balance, making it crucial to choose products that are gentle and suitable for your needs.

Last Thoughts

Cervical cancer treatment can significantly impact a woman’s sexual health and intimacy. However, remember that these aspects are vital parts of your overall well-being. Or, as Sage wisely says: “Think about what sexual intimacy is really about with another person. Orgasms are a great thing to experience, but that isn’t the goal.” With the right support and resources, you can navigate these challenges and build a stronger, more meaningful relationship with yourself and your partner. Research shows that interventions like pelvic floor rehabilitation and targeted therapy can improve sexual function and quality of life for cervical cancer survivors. Open communication with your care team and partner is essential in strengthening your connection and enhancing your life.

By advocating for yourself, exploring new forms of connection, and seeking support from communities like Cervivor, you can redefine intimacy in a way that honors both your physical and emotional needs.

Disclaimer: This information is intended for informational purposes only and does not substitute for professional medical advice. It is essential to always consult your healthcare provider regarding any concerns or questions about your treatment or health. While we strive to provide accurate and helpful information, personal medical decisions should be made in consultation with a qualified healthcare professional.