patient advocacy

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.

From Awareness to Action: Empowering Voices to End HPV-Related Cancers

Every year, over 600,000 people worldwide are diagnosed with HPV-related cancers, including cervical, anal, oropharyngeal, penile, vulvar, and vaginal cancers. In the United States alone, more than 14,000 women are diagnosed with cervical cancer annually. These statistics highlight the urgent need for awareness, education, and collective action—especially on HPV Awareness Day (March 4). The good news? Many of these cases and deaths are preventable.

The Facts About HPV

Human papillomavirus (HPV) is extremely common, with 80% of people contracting it at some point in their lives. Despite its prevalence, many people mistakenly believe that HPV only affects women. However, HPV can affect anyone, regardless of gender. One of the challenges with HPV is that it often has no visible symptoms, making it difficult to know if you have it.

While cervical cancer accounts for most HPV-related cancer diagnoses, cases of head and neck and anal cancers in both men and women are increasing. In fact, HPV is responsible for 60,000 cancer diagnoses in men each year. 

Although there is no approved screening test for other HPV-related cancers, for individuals with a cervix, cervical cancer screening can detect abnormal cells in the cervix that could develop into cervical cancer, while an HPV test indicates that the virus is present in the cervix. If you notice genital warts or have concerns about HPV, it’s essential to speak with your healthcare provider to detect and treat HPV early.

Expert Insights with Dr. Shobha S. Krishnan

Dr. Shobha S Krishnan is a renowned board-certified family physician and gynecologist with over 30 years of experience in primary care and women’s health. As the Founder and President of the Global Initiative Against HPV and Cervical Cancer (GIAHC), she has dedicated her career to combating cervical cancer and HPV-related diseases globally. Her work has taken her to various parts of the world, including rural India, where she has implemented innovative screening and treatment methods, such as visual inspection with acetic acid (VIA) and cryotherapy.

“Cervical cancer is something that we can almost completely eliminate by vaccination and screening. However, we should not even have one death, because we have the tools to prevent it.”

– Dr. Shobha S Krishnan, Future Science OA

Through GIAHC, Dr. Krishnan aims to educate providers, parents, and the public about the importance of HPV vaccination, screening, and early treatment. Despite the challenges faced in both developed and developing countries, Dr. Krishnan remains committed to making the HPV vaccine affordable, accessible, and acceptable to all. Her organization has partnered with various groups, including the American Medical Women’s Association, to raise awareness and promote education about HPV and cervical cancer. Her book, “The HPV Vaccine Controversy,” is a valuable resource for anyone seeking to understand the disease and the importance of vaccination.

Meet Morgan Newman: A Young Adult’s Journey with Cervical Cancer

At just 24 years old, Morgan Newman received the devastating news that she had stage III cervical cancer. Despite undergoing intense treatments, including chemotherapy, radiation, and a metastatic recurrence to her lungs. “I’ll admit, when I was a teenager, I was very hesitant to get the HPV vaccine. My mom begged me to get it, but I told her no because I was skeptical, and I told her it would never happen to me.”

Soon after Morgan entered the survivorship phase, she found her voice through the Cervivor community by attending a patient advocacy training. Now, 10 years later, she’s on a mission to raise awareness and empower others. Morgan proudly serves as Cervivor’s Community Engagement Liaison. “I’m lucky because I went in for a routine screening, and that’s how my cancer was detected. I’m lucky because my body responded to two journeys with cervical cancer.”

HPV-Related Cancer Survivors Share Their Stories

Quinn Billie Jo was diagnosed with stage III anal cancer, which severely impacted her quality of life. The tumor destroyed her sphincter muscle, causing severe issues like incontinence, and she is now scheduled for surgery, which will result in two colostomy bags, one for urine and one for fecal matter. Despite their resilience, Quinn faces the added burden of stigma surrounding anal cancer, often receiving uncomfortable reactions when sharing their diagnosis. Quinn would like to change that narrative.

Patrick, a penile cancer survivor, is advocating for increased awareness and conversation about human papillomavirus (HPV) and its link to male cancers. After being diagnosed with penile cancer in 2020, Patrick underwent life-altering surgery and treatment. He is now urging young people to get vaccinated against HPV and encouraging older men to speak openly about male cancers, emphasizing that conversations about penile cancer should be as normalized as those about breast cancer.

Ada, a 62-year-old single mother of two, was diagnosed with HPV-positive squamous cell carcinoma after discovering a lump on her neck, which she initially thought was a reaction to a bee sting. Following a series of medical appointments, biopsies, and surgeries, Ada underwent 33 radiation sessions and six rounds of chemotherapy. She credits the bee sting with saving her life, as it led her to discover the cancer. With the support of her loved ones, Ada successfully completed her treatment and rang the bell, symbolizing her triumph over cancer.

Teresa, a 40-year-old Black woman, was diagnosed with vulvar cancer after visiting her doctor about a persistent bump on her vulva. Despite her initial calm demeanor, Teresa’s world was turned upside down when her doctor revealed that the cancer was more aggressive than anticipated. After undergoing two surgeries, including a node dissection, Teresa was relieved to learn that the cancer had not spread to her lymph nodes. Now cancer-free, Teresa advocates for HPV vaccination, particularly among young Black women, who she believes are more vulnerable to the virus. She emphasizes the importance of early detection and encourages open conversations about vulvar cancer to combat shame and stigma.

A Call to Action: Eliminating HPV-Related Cancers

So, what can you do to help eliminate HPV-related cancers? The answer is simple: Every action counts, every voice matters, and every choice can make a difference. By taking control of our own health, sharing our stories, and supporting others, we can create a ripple effect that spreads far and wide. Here are some ways you can join the movement:

  1. Get Informed: Learn about HPV, its risks, and the importance of vaccination and screening. Share this knowledge with others to help spread awareness.
  2. Get vaccinated: The HPV vaccine is available for both males and females and can protect against certain types of HPV that can cause cancer.
  3. Get screened: Regular cervical cancer screening can help detect abnormal cell changes early, when they’re easier to treat.
  4. Share your story: If you or someone you know has been affected by HPV-related cancer, share your story to help raise awareness and support others.

The statistics are staggering, the stories are heart-wrenching, but the message is clear: We have the power to eliminate HPV-related cancers. By sharing our stories, educating ourselves and others, getting vaccinated, and getting screened, we can create a world where no one has to suffer from these preventable diseases.

“Our stories are powerful, but they’re so much more impactful as a collective voice.” – Morgan Newman

Let’s continue to break the silence, let’s shatter the stigma, and let’s unite in our quest for an HPV cancer-free future. Join the movement, share your voice, and together, we can make a difference.