quality of life

Let’s Talk About Below-the-Belt Cancers

When the calendar turns to September, it’s a good reason for anyone touched by gynecological cancer to share their story because September is Gynecological Cancer Awareness Month (GCAM).

For those of us in the Cervivor community, September is a significant opportunity to pull out our advocacy boots (and dust them off if they haven’t been used in a while), put below-the-belt cancers in the spotlight, and pick up our momentum to carry us through the remainder of the year. 

Why is GCAM so important?

  • Late-stage cervical cancer is being diagnosed at higher rates in the United States. Historically, cervical cancer has disproportionately impacted Black and Hispanic women. In this study, the overall prevalence of the disease was higher in Black women and there is a large increase in diagnoses for Non-Hispanic White women (CNN).
  • Uterine cancers are on the rise, especially in Black women. It is quickly making its way to becoming the third most common type of cancer among women (NY Times).
  • Fertility and quality of life are still impacting those diagnosed with gynecologic cancers (Oncology Nurse Advisor).
  • Intersectionalities in sexual orientation as well as race and ethnicity show significantly lower odds of undergoing routine cervical cancer screenings (Health Day).
  • Reducing social detriments can improve quality of life, increase survival rates, and close the gap in racial disparities (ASCO Post).

We know there are so many more to list which is why Cervivor continues to be actively engaged in gynecologic cancer awareness. We’re committed to sharing our stories, spreading awareness, and showing the people impacted by gynecologic cancers. We’re facing these disparities head-on!

How can you get involved this GCAM?

  • Share Cervivor content during GCAM. We will have plenty of graphics, articles, and other resources to share with your social media network, across all platforms. Make sure to follow us on Facebook, Twitter, Instagram, TikTok, and Pinterest.
  • Wear Teal and White on #TealandWhiteTuesday. Don’t forget to tag us on Instagram and post your photos in the comment of our Facebook posts!

  • Share your Cervivor Story. Have you shared your story with us on Cervivor.org? Sharing your story on our site is a powerful tool for getting your story out there. Our template guides you with questions, to help you share your cervical cancer story in a way that is personal to you. You can share as little or as much as you like. Once you have submitted your story and it is published, you will be able to share the link with others. Need help getting started? Send us an email at [email protected]!

  • Contact local media to share your Cervivor story. Many times, local news stations, newspapers, and neighborhood publications are looking for content. Reach out to them and share your story. If your story is on Cervivor.org, share the link with them when you reach out.

  • Host a Cervivor Meet-Up. Meet-Ups are local gatherings of Cervivors, networking and sharing in a social environment. You can hold a Cervivor Meet-Up in a coffee shop, restaurant, bar, or anywhere you feel is a welcoming and relaxed place for Cervivors to talk and share. If you’re interested in hosting a Cervivor Meet-Up in your area, contact us at [email protected]. *Cervivor recommends following the latest CDC recommendations for any gatherings.*

  • Become a Partner in Purpose. From care team to community member, your role in cervical cancer awareness, treatment, support, and prevention is of the utmost importance to us. Interested? Sign up here.

  • Donate to Cervivor or host a fundraiser on behalf of Cervivor.

We look forward to a successful GCAM and can’t wait to see how our Cervivor Community comes together to bring awareness to gynecologic cancers!

We’re Part of the Process

Kimberly Williams, Cervical Cancer Survivor

In July 2022, I was invited to my first NRG Oncology semi-annual conference as a newly appointed Patient Advocate. Many of you might be wondering, who NRG Oncology is and what they do?

NRG Oncology comprises the National Surgical Adjuvant Breast and Bowel Project (NSABP), the Radiation Therapy Oncology Group (RTOG), and the Gynecologic Oncology Group (GOG). Together they have more than 150 years of cumulative experience in conducting practice-defining, multi-institutional phase II and III trials sponsored primarily by the National Cancer Institute (NCI).

I’ve never had the opportunity to attend a large oncology conference like this before. There were so many emotions that ran through my head as my colleague and I rushed hurriedly through the building to locate our next sessions to attend. One thought that came to mind was “the why,” like why am I here? After attending the Patient Advocates forum I found that my why never changed. It was for the patients and for our community.

Sitting in the meeting encouraged me and helped me realize that all the patient advocates desire the same thing: we want change. We are equipped with the knowledge to make a difference. We have lived through this experience personally. This meeting was easy (at least easier than I anticipated) as I spoke about my cervical cancer story and my “why” for patient advocacy.

Just as I thought, “This is simple,” the next morning I sat on the panel for the Cervix and Vulva Sub-Committee with physicians, researchers, and so many more experts. I sat down next to the committee chair, Dr. Charles Leath. It was at that moment I said, “This is not simple.”

I was overwhelmed with emotion but soon felt confident because I understood the presentations as they related to clinical trials because I went through treatment as a patient. This one moment shifted my thoughts from ordinary to extraordinary. I realized that my voice mattered and it was important. The NRG Oncology semi-annual meeting was an opportunity I will never forget because it was a reminder that your “why” should be at the forefront of your patient advocacy.

Morgan Newman, Community Engagement Liaison

I was a patient advocate that was chosen on the other side of the NRG Conference with the GOG Foundation patient advocacy efforts. To understand their organization, let’s look at the history behind the Gynecologic Oncology Group:

  • It was founded in 1970 at the American College of Obstetricians and Gynecologists.
  • In 1993, the GOG Quality of Life Committee was formed and patient-reported effects of chemotherapy was the main protocol for their clinical trial development to continue to improve patient quality of life. 
  • And in 2014, their trial GOG-240 showed improved survival rates when bevacizumab was added to chemotherapy for advanced cervical cancer.

Now, this is only a brief glimpse into what this group has accomplished. I was incredibly fortunate to have the opportunity to be one of two Mary “Dicey” Scroggins Patient Advocacy Travel Award recipients. Through this scholarship, I was honored at the GOG Foundation dinner, attended working committee meetings, and learned from the dedicated professionals leading the work in developing clinical trials.

What I learned during this conference was that the GOG has set the standards for cervical, endometrial, and ovarian cancers. They continue in partnership with NRG Oncology to strive for a better future for patient care and outcomes in clinical trials. This experience has made me feel like I was truly part of that process.

When I was diagnosed with a metastatic recurrence of cervical cancer in 2016, I never would have imagined being where I am today as a patient advocate. I really didn’t understand or know how my voice could help make a difference but every time I have an opportunity to attend and interact with experts in the field, I am quickly reminded just how important it truly is and how far I have come since then. Sometimes these feelings are hard to put into words. It can be overwhelming to experience this as a survivor and a patient advocate but it’s something I appreciate and I am forever grateful for.

Kimberly Williams and Morgan Newman are both cervical cancer survivors turned patient advocates. Kimberly represents her state of Texas while Morgan is in Iowa. They are both passionate about making sure the patient voice is heard.